This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. At the first in a series of events called “Parkinson’s IQ + You” presented by The Michael J. Fox Foundation, hundreds of people gathered in Atlanta to learn how to take control of their health care, build their care team and advocate for themselves. Additionally, leading scientists, researchers and neurologists shared the latest information on exciting research being conducted for Parkinson’s disease. Dr. Malu Tansey , professor of Neuro science and neurology at the University of Florida, helped to explain the role stress plays in Parkinson’s. “Stress is a bad player. Stress tends to immunosuppress you. Stress tends to create a situation in your body where all the normal pathways in your body are basically slowing down and they become sluggish. We think even removal of alpha-synuclein and other toxic species from your brain is critical, and stress really dampens those down.” Dr. David Standaert, chair of neurology at university of Alabama at Birmingham, is excited about all the research going into stopping Parkinson’s in its tracks. “Most of my patients, and I’ve asked them this question, ‘If I could tell you that I can’t fix your problems, but they won’t get any worse would you by happy?’ and they’d all be happy with that.” Staneard says there are a number of different ideas out there including treatments around synuclein. There are a couple of big clinical trials using antibodies to remove alpha synuclein from the brain. He’s not certain whether it will work or not, but we are going to find out because those trials are underway.  If you live in the United States, The Michael J. Fox Foundation’s “Parkinson’s IQ + You”, I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here. Saturday, December 14, 2019, Anaheim, California. Saturday, January 11, 2019, Phoenix, Arizona. Other sites recently announced include South Florida, Chicago, Oakland, and Houston. 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… Todd Sherrer, CEO of the Michael J. Fox Foundation.                            Dr. Malu Tansey, professor of Neuro science and neurology at the University of Florida Dr. David Standaert, chair of neurology at university of Alabama at Birmingham Michael Fitts, Michael J Fox Patient Council Dr. Stuart Factor, movement disorder specialist, professor of neurology at Emory University and program director at movement disorders Drew Burke, Person with Parkinson’s Elaine Bookman, Person with Parkinson’s. Follow her blog.   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. 

Guest writer Rebecca Gifford, the wife of Larry Gifford In this episode of When Life Gives You Parkinson’s, Larry and I explore how we keep the magic alive in the bedroom and beyond when there is always an elephant (a.k.a Parkinson’s disease) in there with us eating peanuts and taking up a lot of space. Your bed. It’s your private space. It’s restful, probably even peaceful sometimes, and hopefully happy. It can be a safe place to feel and even grieve. If you’re fortunate enough to have someone to share it with, it’s a place for communication, intimacy and excitement. Larry and I have our most important conversations in bed. Since he was diagnosed with Parkinson’s these conversations happen regularly. We talk, share triumphs of the day — sometimes big successes and sometimes simply a hilarious moment with our son. We complain, cry, say things we probably shouldn’t, unconsciously avoid saying some things we probably should. Sometimes we have sex (but we’ll talk about that a lot more in this week’s podcast). And we sleep. All the things that happen in our bed are the most important things for our relationship, and for our well-being. It makes sense to pay attention to it. That’s why Larry and I sought advice from nurse and sex health educator, Maureen McGrath. “This is new for you, Parkinson’s disease, and it is different for every patient,” she said. McGrath told us 70% to 80% of the couples she counsels are also dealing with medical conditions that impact intimacy in their relationship. We had a lot of questions. Do we have a bedroom that is conducive to sleep and wellness? “Sleep is critical.” McGrath said, “Make sure you don’t have a television in your room, or an iPad or bring a phone to bed. Dedicate your room to sleeping and/or sex.” Have we created a space that is as safe and nurturing as it was before Parkinsons entered our life? McGrath suggested, “Make your room an oasis.” We made plans to use our aromatherapy diffuser more frequently and make sure our bed is plush and comfortable for us both. Be sure to listen to snippets from our bed shopping excursion. Are we still affectionate with each other, even though nothing is as effortless as it used to be? “You have a need to be close, you have sexual desire, but you may have a little bit of fear around it,” she said. McGrath recommended not overthinking it, returning to what you know and making it a priority appointment in our life. By acknowledging Parkinson’s has changed how we sleep, connect, and show affection for each other, we are learning to look the PD elephant in the eye, smile at it and thrive on all levels. Including in bed. Thank you for listening. 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Deana Grinnell Maureen McGrath, Nurse and Sexual Health Educator. Her website is backtothebedroom.ca. Follow her on twitter @back2thebedroom. Check out her Ted X Stanley Park talk “No Sex Marriage – Masturbation, Loneliness, Cheating and Shame” Gila Bronner, founder and former Director of the Sex Therapy Service at Sheba Medical Center in Israel Rebecca Gifford, my amazing wife. Henry Gifford, Captain Awesome (Our son). 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. 

After my diagnosis with Parkinson’s disease, my first call was to the Parkinson Society of British Columbia. They were quick to offer information on support groups and mailed a packet of brochures, handouts and relevant information that immediately made me feel less anxious and more informed. That is why each year my family raises money and walks in the Parkinson SuperWalk in Vancouver. This year we had a team of 12 walkers on our “When Life Gives You Parkinson’s” team and my 10-year-old son Henry went door to door in our neighbourhood to help raise funds. His efforts contributed $160 to our team. In 1990, a small group of volunteers in Toronto decided to walk up Yonge Street to raise awareness for Parkinson’s disease and they called it “SuperWalk” due to the long distance. This year, Parkinson Canada held more than 82 SuperWalks across Canada with 10,000 participants and exceeded its goal of raising more than $2.4 million. While that seems like a great amount of funding, Jon Collins, Associate Director of Events and Partnerships for Parkinson Canada says, “The reality is, with 25 Canadians diagnosed every day, with our population aging, and (the number of people with) Parkinson’s expected to double by 2031, we are anticipating growing needs.” Organizations like Parkinson Canada are privately funding, there are no government dollars, and they rely on individual donations to maintain their programs and advocacy.  Parkinson’s IQ + You I want to thank the great people in Atlanta for their hospitality as the Michael J. Fox Foundation’s “Parkinson’s IQ + You” blew through town earlier this month. Each event will be highlighted in upcoming Extra Dosage episodes. If you live in the United States, I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here. Saturday, December 14, 2019, Anaheim, California. Saturday, January 11, 2019, Phoenix, Arizona. Other sites recently announced include South Florida, Chicago, Oakland, and Houston. 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… Andrew Davenport, Chairman of the Board of the Parkinson Society of British Columbia Caroline Wiggins, Education & Support Services Senior Coordinator for Parkinson Society of British Columbia Jon Collins, Associate Director, Events and Partnerships , Parkinson Canada Henry Gifford Our generous neighbours and my loving wife Rebecca Gifford 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. 

Around the world there continues to be a worldwide cry for help in the Parkinson’s community. Since October 2018, there has been a global shortage of SINEMET®®®. This is the brand name version of levodopa-carbidopa, the gold-standard drug, used to treat Parkinson’s disease, which Merck packages and sells. It started with a supply shortage, which lead to a third-party manufacturer change. Anytime you change production of pharmaceuticals, the manufacturer has to re-ratify the entire production cycle. Merck now says SINEMET®IR®, Instant Release, will not be available until July 2020 and production has ceased altogether on the continuous release versions including SINEMET®CR 100/25 and 200/50. In this episode of the podcast, I talk to folks around the world who were taking SINEMET®to great effect only for it to be unavailable one day and replaced by a less effective, generic version of the drug. The U.S. Food and Drug Administration first approved SINEMET® in 1975. Nothing in the last 44-years comes as close to normalizing the lives of people with Parkinson’s as it does. David Ashford Jones was diagnosed with Parkinson’s at 40 years of age after more than a decade in marketing and sales for pharmaceutical companies. He says people with Parkinson’s easily notice the difference between the brand name version of SINEMET® and the generic. The difference between SINEMET® and the generic versions is not in the active ingredients, but in the absorption rate of the levodopa into the body in order to have an active effect on Parkinson’s symptoms.  He offers this advice to other people with Parkinson’s, “If you can get a consistent version (of a generic), that minimizes the potential for that swapping of levels.” The goal for maximum effectiveness of any form of levodopa-carbidopa is to keep the gaps between peaks and valleys of levodopa in your body to a minimum. Merck has stated that there is not a shortage of levodopa-carbidopa in Canada, because 90% of the people with Parkinson’s are on generic versions. Worldwide, others have estimated 80% of people are on a generic, but Merck did not address the global supply even when requested. The reality is 10-20% of the people with Parkinson is who are taking SINEMET® amounts to somewhere between 700,000 and two million people worldwide. After Merck ceased production, it appears the generic drug suppliers could not ramp up production to meet the expanded hole in the market.  Merck agreed to offer written responses to some of the questions from When Life Gives You Parkinson’s, WLGYP: Why is there a shortage [of SINEMET®]? Why couldn’t it be anticipated? MERCK: (...) It is important to note that there are no current shortages of either formulations of carbidopa-levodopa in Canada as various generic manufacturers have made them available to Canadian patients. Currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019) Based on current demand, depletion of the current inventory of SINEMET®CR 100/25 MG is expected in September 2019. SINEMET®CR 200/50 MG is no longer available. Despite the availability of generic alternatives in Canada, Merck understands that the situation may be disruptive for patients and is working to identify solutions to ensure a more stable source of supply is available for the SINEMET®IR® formulation. Based on our current information, we are hopeful to be able to rely on a more stable source of supply for the SINEMET®(IR formulation). However, for the time being, the supply disruption for SINEMET®(IR formulation) will continue until mid-2020 in the Canadian market. Merck is committed to continue to provide regular updates on the situation to Health Canada and Parkinson’s Canada. For the most up to date information regarding SINEMET®supply availability Canadian patients can consult www.drugshortagescanada.ca. WLGYP:What are the differences differences between SINEMET® and generic forms MERCK: As defined by Health Authorities, a generic drug is a copy of a brand name drug. The generic drug is pharmaceutically equivalent to the brand name drug: it contains the identical medicinal ingredients, in the same amounts and in a similar dosage form. Generic medications may have different non-medicinal ingredients than the brand name drug, but the company must show that these do not affect the safety, efficacy, or quality of the drug compared to the brand name drug.[i] Currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019) WLGYP: What is the timeline for SINEMET®IR to be available in Canada, U.S., U.K, and around the world? MERCK: We expect that the supply disruption for SINEMET®IR will continue until mid-2020 in the Canadian market. Merck Canada Inc. remains committed to finding solutions to provide this product to Canadian patients as quickly as possible. The most up to date information regarding SINEMET®supply availability is regularly updated on www.drugshortagescanada.ca. It is important to note that currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019) We have been in contact with Parkinson Canada and Health Canada and continue to provide them with frequent updates on the situation as additional information becomes available. Thank you for listening. 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Sandy Jones, Parkinson Canada Nadia Stewart, Global News – watch her October 2018 report on SINEMET® David Sangster, person with Parkinson’s, creator of Parkinson’s WorldTV, follow him on twitter @1and20Parkinsons John Hougan, person with Parkinson’s Gary Harysom, person with Parkinson’s Kitty Fitton, person with Parkinson’s, observational comic at https://www.kittyfitton.com, follow her on twitter @kitty_fitton  Rasheda Ali, author, speaker, advocate at http://rashedaali.net/, follow her on twitter @rashedaali David Ashford Jones, read his blog https://phoenixrisingmyquestforchange.wordpress.com/pharmacology-basics/ Paul Mayhew Archer, author, producer, comedian http://mayhew-archer.com/ Eric Chapman, contributor, in the role of “Mark-Merck” Rebecca Gifford, my amazing wife. Merck, Merck.com, follow on twitter @merck, 1-800-444-2080, outside the US & Canada Merck is known as MSD 908-740-4000. 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. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. This Extra Dosage is about a young man and his family, using their passion for running, to help raise funds for Parkinson’s research. Anthony Kerkman, 32, lives in Pickerington, Ohio in an idyllic neighbourhood with sprawling manicured lawns, multi-tiered back decks, and driveways that are three cars wide.  In September 2018, Anthony emailed me directly for the first time in his life. A month later, he emailed again.I was the one fighting back tears. Over the next 10 months, Anthony, Lesley and daughters Hannah, 15, and Sophia, 11, worked with the Michael J Fox Foundation and the Columbus Running Company to organize a family friendly 5k walk/run. Anthony met with city officials, fire chiefs, and school administrators. He filed for permits, ordered t-shirts, found sponsors and rallied his family and friends from all sides. I flew to Ohio for the August 24th Tremor Trot. Anthony, his family and I showed up before the sunrise to hang banners, greet volunteers and set up tables so his grandmas could run registration. Family friends staffed the water stations. It was a family affair from top to bottom. Even Hannah was instrumental in the event, she drew the very cool logo of an orange fox in sunglasses, running a race. Before too long the crowds arrived. I immediately recognized many faces in the crowd. It was a mix of childhood friends, fraternity brothers, and my parent’s friends for 60-some years. They were there to support Anthony and his efforts to raise money for Parkinson’s research as much as they were there to support me and my journey with PD. Anthony wasn’t surprised, “We are down here watching you do all this advocacy in Canada and we’re not in Canada. We’re here. This was something we could do to show our support.” By the time the whistle blew to start the 5k, 175 participants had signed up which far exceeded Anthony’s goal of 75. The event raise $8,000 for the Michael J. Fox Foundation, 100% of which will go directly to high-impact Parkinson’s research. What I have learned through Anthony’s efforts is that everyone can do something to help raise funds or awareness of Parkinson’s. I host a podcast, speak on radio and TV and host events. That is my super power, while running in 5ks for charity is Anthony and Lesley’s. Use what comes natural to you to help make a difference in the lives of people with Parkinson’s disease. Go ahead, take the first step. Parkinson’s IQ + You In the coming months, I will be traveling with the Michael J. Fox Foundation’s to host a series of live, free, day-long educational events called “Parkinson’s IQ + You.” We will be featuring highlights of each event in upcoming Extra Dosage episodes. If you live in the United States, I hope to see you soon! See the full schedule and register for free here. Saturday, September 14, 2019, the series kicks off in Atlanta, Georgia. Saturday, December 14, 2019, Anaheim, California. Saturday, January 11, 2019, Phoenix, Arizona. Other sites recently announced include South Florida, Chicago, Oakland, and Houston. 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… Anthony Kerkman, Lesley Kerkman, Hannah and Sophia, Marty Gifford, Dan Gifford, Dee Gifford, Tracy Cherry, Debi Brooks, Columbus Running Company, and the city of Pickerington, Ohio. 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. 

A year ago, I started the podcast When Life Gives You Parkinson’s. I had been diagnosed a year earlier, on August 17, 2017, with Young Onset Parkinson’s Disease at the age of 45. I can feel the disease progressing. I update my co-host Niki Reitmayer on my symptoms. In the last six months, I continue to have trouble getting a good night’s sleep, I’m now battling day time fatigue. I have long stretches of numbness and pain from neuropathy in my feet, increased body pains, anxiety, hot flashes, and unplanned weight loss. Maybe most concerning for me is that my wife Rebecca has noticed my personality is changing. As I talk to others with Parkinson’s, “shift in personality” is not an uncommon observation. The spouses of BBC TV and radio writer, producer and comedian Paul Mayhew Archer, American Ninja Warrior Jimmy Choi and Amazing Race Canada winner Tim Hague all noticed personality shifts.  Personality shifts in people with Parkinson’s can be triggered by many different things including; increased fears and loss of control of one’s life, medication side effects, depression, pain, anxiety, fatigue and missed or incorrect dosages of medication. Our partners at Parkinson Canada offer the following advice when a person with Parkinson’s begins demonstrating more aggressive behavior, which occurs more subtly in the initial years and is more pronounced in late stages of Parkinson’s especially when accompanies by dementia. Stay calm. Review the PD medication schedule to see if a dose has been missed or taken incorrectly. Give the person space to cool down. Try to leave about 5 feet between you. Ask what is troubling the person so that you can identify the cause of the emotion and behaviour. • Listen to the person. Resist arguing or being confrontational, but provide reassurance. For example, “I know it is really frustrating when you can’t control what is happening…” Speak slowly, and in a clear, confident, and reassuring voice. Raising your voice may escalate the situation. Redirect the person to focus away from the issue causing aggression. Offer to take a walk, or do a calming activity together. If your safety is threatened, leave the situation, and return after a few minutes. Thank you for listening. 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Paul Mayhew Archer http://mayhew-archer.com/ Tim & Sheryl Hague http://uturnparkinsons.org/ Jimmy Choi https://www.facebook.com/jcfoxninja/ Naomi Casiro BSc. (Kin), MPT, Certified PWR      https://www.neurofitbc.com/ Henry Gifford Rebecca Gifford 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. 

Larry Gifford is a 47 years old husband and dad with a great career and a degenerative brain disorder without a cure. Join him, his wife Rebecca and their son Henry as they share with you, and co-host Niki Reitmayer, the journey into what it’s like to live and work with the disease. Season 2 launches Wednesday September 4th.

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

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  

In this special episode of When Life Gives You Parkinson’s, the Parkinson’s community from around the world come together to share what they believe you should know about this disease. I also interview Matt Eagles. He was diagnosed with Parkinson’s when he was 8-years-old. He just helped to create and launch a new initiative called “Parky Life.” Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to Matt Eagles of ParkyLife https://parkylife.com/ and everyone who contributed to this episode. For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline is 1-800-565-3000 Or follow them on Twitter Parkinson Canada            @ParkinsonCanada Parkinson Society BC      @ParkinsonsBC

In this episode, I talk with Dr. Aleksander Videnovic, a neurologist specializing is movement disorders and sleep medicine at Massachusetts General Hospital and Harvard Medical School. Dr. Videnovic will be speaking at WPC and hosting a roundtable, both of which will focus on Tips and Tricks to Managing Sleep Disorders in Parkinson’s. This link will take you to the full program schedule. The first tip he shares is to report poor sleep to your neurologist and general practitioner. He says sleep disorders are widely under-reported. The most common issue for people with Parkinson’s is sleep fragmentation. It’s a Parkinson’s specific insomnia that makes it difficult to stay asleep through the night. Dr. Videnovic preaches the importance of a good night’s sleep, “We need sleep to reset our system, we need sleep to consolidate our memories and even more recently it has been discovered that sleep is the stage during which toxic metabolites get eliminated from our brain and from our nerve cells.”  If that toxic waste is not expelled from our brain, Dr. Videnovic notes it can cause negative effects on person’s performance, safety, alertness, exacerbate symptoms of Parkinson’s disease or keep Parkinson’s medications from working effectively. 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 the Japanese people deal in a lot of ambiguity. It is difficult at times to draw out opinions or get a definitive yes or no answer. Culturally, Heron says this is tied to the important and fundamental Japanese concept of harmony or “Wa.” The word Wa is often used in the Japanese language to give a connotation of something’s Japanese-ness. For instance, Washoku, is Japanese food and Wafuku is Japanese clothing. You can Google the words to hear proper pronunciations.

Super Awesome Science Show (SASS) talks with Larry Gifford about his journey with Parkinson's and find out how he manages to cope both physically and emotionally. His story is both compelling and also inspiring and will reveal why his podcast has been designated at one of Apple Podcast’s best of 2018.   In our SASS class, we’re going to explore the efforts to find answers to help those with Parkinson’s Disease. We speak with Rachel Dolhun, the Vice-President of Medical Communications with the Michael J. Fox Foundation. She reveals how the foundation is working to improve awareness and research into this disease. We also learn of her personal story as both a researcher in movement disorders and also as a communicator at the Foundation. She reveals that working to help those with Parkinson’s is truly a vocation.      If you enjoy The Super Awesome Science Show, please take a minute to rate it on Apple Podcasts and be sure to tell a friend about the show. Thanks to you, we’ve been nominated for a Canadian Podcast Award as Outstanding Science and Medicine Series. Let’s keep the awesome momentum going together!   Twitter: @JATetro Email: thegermguy@gmail.com

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

I’m a fairly hopeful guy. Sure, I have dark moments as we all do but, hope wins out more often than not. You might be wondering how I can have hope or be hopeful while dealing with an incurable, progressive brain disease like Parkinson’s. It’s a fair question. I don’t know that I have the answers, but in this episode I go about searching for a better understanding of the role that hope plays in the Parkinson’s community. What I discover is that hope is the one driving force that binds us all together. No matter if you are a person with Parkinson’s, a caregiver, a nurse, neurologist, physiotherapist, counselor, general practitioner or a support group leader we are all dealing in hope. Dr. Matt Farrer is a Professor of Medical Genetics and Molecular Neuroscience at Pacific Parkinson’s Research Centre at the University of British Columbia. He is agenetic researcher who hopes his work will eradicate Parkinson’s. Last year, he mapped my genome and is set to reveal the results of those tests in this episode of the podcast. I also talk to Wendy Edey, a facilitator of Hope at “Hope Studies Central” at the University of Alberta, who has studied the impacts of hope as it relates to Parkinson’s disease. She says, “When you have hope you have the capacity to think about the future and be okay.” Someone who embodies the power of hope in my eyes is the Reverend Dixie Black. The Deacon of Christ Church Cathedral in Vancouver has been living with a Parkinson’s diagnosis since 2013. “Hope means to me trust. Trust that however it goes, I’m not alone and I’ll be taken care of.” In the episode we talk about hope as a common denominator to science and spirituality, we explore the concept of hope, where to find hope, how to keep it and the role it plays in the living our best lives despite the Parkinson’s diagnosis.   I hope you listen.   Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you toDrMatt Farrer and the staff at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth.  Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home Reverend Dixie Black, Deacon of Christ Church Cathedral in Vancouver. Read and listen to her sermons here. And special thanks to my wife Rebecca Gifford. For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline is 1-800-565-3000 Or follow them on Twitter Parkinson Canada            @ParkinsonCanada Parkinson Society BC      @ParkinsonsBC Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer