When Life Gives You Parkinson's

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford, and I explore the important role caretakers play in lives of people with Parkinson’s. We visit with people we met through season two to discuss the balance between being a spouse and a caregiver; we wrestle with what to call these important people and wonder why the medical and scientific communities do not listen to them more closely and tap them for real knowledge about living with Parkinson’s disease. Through the discussions, it has become clear to me that our partners are amazing people who care for us and prepare, as best they can, to deal with all of our unpredictable PD symptoms. And they also have responsibility to run the household, sometimes over small children and pets, and then their own self-care, their own interests and careers get whatever time is left over. Usually very little, if any time is ever leftover. Sure, we’ll travel while we can and set off on new adventures as COVID, money, and time allows. Life doesn’t end with a diagnosis. It changes. It constantly changes. As years roll on, these amazing people will bear witness to their partner’s silent suffering as Parkinson’s slowly traps the person they love inside a body that will no longer obey. Each minute… Each day… Each year... Parkinson’s tightens its grip. In my case, the disease has already begun to restrict my ability to be present at times and to empathize. Slowly, this relentless, degenerative neurological brain disorder causes disorder in my brain. It steals my thoughts and my voice. In time, I know Rebecca will be there to support, care, challenge me and others, and advocate on our behalf. A writer by trade, she will find clarity and might in putting pen to paper, invoking the compassion of Quan Yin and just the right words to strike like lightning and reverberate like thunder. There are millions of people like my wife who have untapped knowledge and a lived experience with Parkinsons that researchers and neurologists could leverage in making life better for people with Parkinson’s until that day when we find a way to end it. We should all demand to hear what they have to say. Immediately. We are all up against the clock. Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to: Tim & Sheryl Hague Check out their holistic Parkinson’s center at “U-Turn Parkinson’s” and follow Tim on Twitter and Instagram @TimHagueSr Deana Grinnell Jimmy Choi – follow Jimmy on Twitter @JCThr33 and on Instagram @jcfoxninja Gila Bronner – Director of Sex Therapy Services at Sheba Medical Center. Ellen Bookman – Ellen is very active in her PD boxing community www.pdboxing.org. Follow Ellen on Twitter @luvlivin3 Joe & Sarah Possenti and to my wife and partner in Parkinson’s Rebecca Gifford. Follow her on Twitter @RebeccaJGifford and on Instagram @loveandmud 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. Navigating Parkinson’s and COVID-19 Podcast: Check out the limited series podcast on COVID-19 and Parkinson’s that I am hosting with Dr. Rachel Dolhun for 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s, I interviewed the founder of ESPN, Bill Rasmussen, who publicly announced his Parkinson’s in 2019. Bill was diagnosed six years ago, he is still active and still travels around the country giving talks to students and business leaders. At first, he says, he tried to hide his symptoms during his speeches. “My left hand is the one that has the biggest twitch, so to speak. I thought I'd keep it behind the podium or this or that, and after one event, they sent me a tape and I looked and that wasn't very effective. And so at that point, I said, "You know what? This is a fact of life. It's not anything to be embarrassed about. People catch cold, people break their leg, people knock their head up against a wall or whatever. And that's okay so why isn't Parkinson's okay?" The 87-year old takes medication each day, strives to keep operating at the same level as before his Parkinson’s diagnosis, and still wakes up each morning with a positive thought. As you might expect from the founder of ESPN, he has an analogy in regards to PD. He says,”The researchers are like the official scorekeepers up in the booth, but we are the players on the field. We’re walking through it every day. They can study my brain, but I have to use my brain. And they can study your brain, but you have to use your brain to get through each day. And those are the things that I think if we can convince people when you hear the word Parkinson's, you don't stop thinking, you don't stop living or any of those things. You adjust and keep on keeping on, as they say.” My interview with Bill Rasmussen is featured as part of limited series of podcasts produced by the Michael J Fox Foundation, co-hosted by Rachel Dolhun, and me. All the episodes can be found online at The Michael J Fox Foundation for Parkinson’s Research website. Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Learn more about your ad choices. Visit megaphone.fm/adchoices

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 He

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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

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 Art https://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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

This week on the podcast, we’re talking about writing as a life skill. Learning to access your own inherent creativity can be a powerful tool for any of us dealing with challenge and change. For folks with Parkinson’s in their lives, it can offer both physical and emotional benefits. Science agrees! Studies and reputable sources tell us that writing and other forms of creative expression can reduce stress, help with sleep, improve cognition, improve your mood, help manage symptoms of depression, lower blood pressure, improve lung and liver functioning and decrease time spent in the hospital. Beyond the more measurable benefits, I believe — because I’ve experienced it and seen it over and over — that learning to access that beautiful creative space we all have can bring balance and even peace when you’re feeling overwhelmed. It can help us change our relationship with Parkinson’s Disease, or any of life’s challenges, by giving us a safe and healthy place to express our feelings and thoughts, explore our inner life, find perspective and guide us toward a way to move through those dark times. Often, acknowledging what you’re experiencing by simply writing it down is a critical first step towards healing. If we take it to the next level, there are even more benefits to be found. When we are courageous enough to share our expressions, we all benefit. Stories bind us. They reveal our shared humanity through humour, drama and vulnerability. Writing about our worst and best moments and everything in between can light the way and inspire others dealing with pain or adversity...which is all of us, really. Offering glimpses into our inner lives gives us in the Parkinson’s community an opportunity to support and strengthen each other. However you choose, express yourself! If you feel compelled, share it with others. No matter what, it’s good for you and time well spent. Who knows? Writing those first few words can be a step on a new path towards greater wellness. —- This week’s show notes were contributed by Rebecca Gifford, writer, workshop facilitator, partner in Parkinson’s to this podcast’s creator and host Larry Gifford, and this episode’s co-host. Her memoir, Cancer Happens: Coming of Age with Cancer, was published by Capital Books in 2003. She currently offers her writing workshop for non-writers to people with Parkinson’s and their families through the Parkinson Society of British Columbia. Feel free to 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 our special co-host this week, Rebecca Gifford. Also, thank you to the following contributors and guests. David Sangster, follow his “micro-blogging” on twitter @1in37Parkinsonsand his videos on YouTube Sharon Krischer, follower her blog “Twitchy Woman” Jonny Acheson, follow him on twitter @pdinfocus Allan Cole, follow his blog “PD WISE” Matt Eagles is the creator of ParkyLife Ellen Bookman, follow her blog “Loving Living” Heather Kennedy, follow her blog “Kathleen Kiddo” Ava Butler, author of “Parkinson’s; A Love Story With Dementia For Dessert” Steven Ward Martino Costa Christie Daniels Additional Resources for Parkinson’s Writing: The Michael J. Fox Foundation Blog “Fox Feed”and a list of additional books and resources Parkinson’s Life “Eight must-read books about Parkinson’s.” “Perserverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”by Tim Hague 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 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. Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design Learn more about your ad choices. Visit megaphone.fm/adchoices

What are the different possible triggers for how people get Parkinson’s? Find out in this episode as I try to narrow down how the degenerative brain disorder was unleashed on me. After Niki and I chat about the “how,” my wife ,Rebecca and I begin to explore the “why?” If you have Parkinson’s, you may want to play along at home while you listen. Here’s a handy check list to see what factors potentially triggered your onset of PD. Check ALL that apply: I am male. I am older than 60 years old. I have parents or siblings who have Parkinson’s disease. Genetic tests show I carry a gene that is associated with the onset of Parkinson’s disease. Genetic tests show I carry a gene that is associated with brain degeneration. I play or played a high contact sport (Football, Hockey, Rugby, Boxing, Martial Arts) I have played or played high contact sports for more than eight years. I have experienced several concussions. I live or have lived near a major, busy road. I have worked or lived near a chemical plant. I have suffered Agent Orange exposure. I have been exposed, over a long period time or at extremely high levels to pesticides. I have been described as a workaholic, a Type-A personality, or stressed-out. I do not exercise. I have had a stroke. I have injected the MPTP strain of synthetic Heroin and suffered spontaneous Parkinson’s. I was born with damaged dopamine-producing brain cells. I died. During my autopsy, Alpha-Synuclein was discovered clumping in my brain (Lewy Bodies). I did not realize how much I was asking myself, “What did I do to get Parkinson’s?” until I started putting together this episode. The recent study by Cedars-Sinai Hospital in California that we discuss at the end of the episode was a real revelation for me. It suggests that people with Young Onset Parkinson’s may be born with malfunctioning dopamine producing brain cells, which leads to the clumping of the protein Alpha-Synulcein (Lewy bodies) and ultimately leads to the onset of Parkinson’s disease. In the episode, we hear from many qualified professionals about different reasons how Parkinson’s onsets. Sohini Dhowdhury, Deputy CEO of The Michael J. Fox Foundation, discusses why she is so interested in Alpha Synuclein research. “We know it’s the hallmark of Parkinson’s. Research and therapies targeting this protein gets to the root biological process,” Chowdhury said. At UCLA, Dr. Jeff Bronstein, the head of the movement disorder clinic there and Dr Beata Ritz, professor of epidemiology at Fielding School of Public Health, collaborate on environmental factors that could trigger the onset of PD, like pesticides, both for the home and industrial use. Dr. Ritz has little doubt when she speaks on this topic, “Some pesticides are neurotoxic in a way that causes Parkinson’s disease when you are exposed over a very long time or very high levels.” In the episode, we examine the herbicide Paraquat, which is banned in many countries around the world, yet remains one of the most widely used chemicals to protect crops. There are many ways people can trigger Parkinson’s and many reasons why someone is diagnosed with it. Dr. Bronstein believes every case is unique, “I think of it as a humungous Venn diagram in which there and many, many different factors.” In the end, how I got Parkinson’s may not matter to anyone else, but me. But, for me, I’d be more comfortable knowing it was hibernating within me until I was ready for it, instead of me doing something to unnaturally cause it. In reality, I’ll likely never know what combination of things unlocked this disease. On the flip side, it’s brought me as much joy, friendship, perspective, and purpose in life – and maybe more – than any one thing in my life. Feel free to 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests: Dr. Jeff Bronstein, Head of the Movement Disorder Clinic at UCLA Dr. Beata Ritz, professor of Epidemiology at Fielding School of Public Health, Dr. Malu Tansey, Director, Center for Translation Research in Neurodegenerative Disease Dr. Matt Farrer, Program Director, Nuerology & Movement Disorders at University of Florida Michael Brauer, professor, UBC school of population and public health Sohini Chowdhury, Deputy CEO of The Michael J. Fox Foundation Marty Gifford Rebecca Gifford The book referred to in the podcast was “The Case of the Frozen Addicts.” 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 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

In this episode of When Life Gives You Parkinson’s, I talk with filmmaker Zack Grant, the driving force behind the Parkinson’s documentary, “Shake with Me.” The thirty-minute film was originally intended to document how Parkinson’s impacted and inspired Zack’s mom, Debra Magid, to return to her fine art roots and begin to paint bold, colorful, big-eyed, portraits. It turned into an intimate, authentic time capsule, capturing moments and conversations as a family wrestles with a Parkinson’s diagnosis. Debra was diagnosed in 2012. She decided to keep the Parkinson’s a secret from her kids. Debra explains her decision in the film, noting Zack was already out of the house, but his sister Elizabeth was still living at home. Debra said, “I was afraid if she thought I was sick that she wouldn’t even go to college. That she wouldn’t launch.” About a year later, Elizabeth found her Mom’s medication hidden in a drawer and that secret was out. The other secret Debra was keeping was that the Parkinson’s was motivating her to paint again. As a college student, she was an aspiring product designer and had a passion for fine air. Her diagnosis triggered that passion again. “What I’ve been doing is drawing faces, interpreting what the face is, and what I see in it. Kinda of telling a bit of a story.” Debra continues, “I do feel lucky to have found such a strong voice this late in life. I think Parkinson’s is like a little bird sitting on your shoulder going, ‘tick-tock, tick-tock.’ Time is going and don’t waste what you have.” After explaining the diagnosis to her family, it would be several more years until Debra was comfortable sharing the Parkinson’s diagnosis with everyone in her life and eventually everyone in the world through Zack’s film. “The film was supposed to be this very small piece about the juxtaposition of her art, her diagnosis and her changing health,” said Zack. At some point, he says the family realized it was much more than that, “There was this desire to have these conversations about how Parkinson’s has affected our family.” The film touches on advancing symptoms, decisions to take more and different drugs, the struggle of who to tell, when to tell them and how Parkinson’s impacts everyone in the family, not just the individual diagnosed. Today, Zack, Debra and the family are more open and honest with each other, because of the experiences they shared in making film. For Zack, the film has refocused his career, “I think this film was a really ambitious way of trying to get in touch with my feelings around Parkinson’s. Now I am in this place artistically where I want to do more personal stories. And in fact, I don’t want to touch anything that I can’t find a personal way in to.” The film “Shake with Me,” is available for small group screenings, film festivals and for free download on Vimeo. Feel free to 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests: Zack Grant, Debra’s son and filmmaker. This is the official website for shakewithmefilm.com View his film “Shake with Me” for free on vimeo. Check out his other work at zackgrant dot com. Debra Magid, for sharing her Parkinson’s story and her art. Check out her website www.DebraMagid.com . Jim Grant, Debra’s husband Elizabeth Grant, Debra’s Daughter 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 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

I will introduce you to Jeanette and Barry Pynn. They are friends of Rebecca and mine that just went through a gut-wrenching couple of years dealing with a misdiagnosis. Jeanette was a runner for her whole life. After decades of raising kids, a great marriage, and dreams of traveling and enjoying the final decades of life together, Jeanette’s gait changed. “I couldn’t flatten my foot out during a run,” she says. Doctors treated her foot issues for years through orthotics and creams. Three years later, the whole left side of her body shutdown after jumping into the Adriatic Sea. Something was definitely wrong. After months of tests, Jeanette received a diagnosis in the Parkinsonian family that she was not expecting: Multiple System Atrophy, also known as MSA. It carries similar symptoms to Parkinson’s but is more aggressive, has a quicker progression and is deadly. The Mayo Clinic reports people with MSA typically live seven to ten years after symptom onset. This is an important fact that Jeanette and Barry did not know and a vital detail that her neurologist failed to mention. Barry remembers leaving the appointment somewhat encouraged, “When we heard that it might be a relative of Parkinson's, it was actually it was a relief.” That relief quickly gave way to fear, when Jeanette was waiting for her new prescriptions at Costco surfing the internet, “I was reading up on the disease and I looked over at Barry and I said, I don't think this is very good. And he said, In what way? And I said, I think you better read this because I can't I can't really explain it to you.” After two years of wrestling with the diagnosis, the disease, and her own impending death, Jeanette and Barry reached out for help. They were in search of support, community, information, context and understanding. Rebecca and I met Barry in the Spring of 2019 at the annual meeting for the Parkinson Society of British Columbia. They were listeners to the podcast and had traveled from Bowen Island, because they read we would be at the event and they wanted to connect. We chatted, they shared their story, and soon we discovered we got along. We became fast friends. And in the back of our heads, we understood we were entering into a friendship with Jeanette, at least, was a proposition that wouldn’t likely survive the next decade. Rebecca’s cell phone rang on a Saturday morning in September last year. It was Jeanette. She had seen a new neurologist, a movement disorder specialist, at the UBC Brain Centre. “She said that it's most likely certain that I have Parkinson's disease and not MSA.” Jeanette continued through tears, “Whoever thought they'd be so happy to have Parkinson’s?” The misdiagnosis of MSA is certainly not rare. A 2015 study featured on Neurology.org examined 134 autopsied brains of people who were clinically diagnosed MSA while living and only 63% had the correct diagnosis at death. As it relates to Parkinson’s disease, a new Parkinson’s UK study shows 25% of people with Parkinson’s are misdiagnosed. A third of those were given medication for an illness they didn’t have and a 10% underwent a needless operation or procedure. Misdiagnosis is likely to continue until researchers discover reliable biomarkers to aid in the diagnosis of Parkinson’s and related disease. Feel free to 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 Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests: Jeanette Fisher Pynn Barry Pynn Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home Dr. Jonathon Squires at Djavad Mowafaghian Centre for Brain Health Dr. Stuart Factor, Director of Movement Disorders Program at Emory University School of Medicine. Rebeca 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 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s, we explored the Parkinson’s legacy of Muhammad Ali. He was a boxer, a philanthropist, a Civil Rights leader, a dedicated Muslim and an advocate for Parkinson’s. In retracing the onset of Ali’s Parkinson’s disease, it is evident he was aware, his doctor was aware and the public was aware that something was happening even as his boxing career was continuing on. The slowness, rigidity, and slurred speech all can be traced back to the mid-70s. Ali’s physician and corner man Dr. Ferdie Pacheco noticed the champ was slipping neurologically in 1977 and resigned after Ali, his wife and trainers ignored his concerns of brain damage which he warned could lead to Parkinson’s. Looking back at Ali in the ring and on talk show interviews from that year through his diagnosis in 1984, you can hear his voice change and his movements slow down. This is how he described what it felt like to him on The Dick Cavett Show, “You see what you wanna do. I should really hit you. Right? And then, I throw one and it lands right there. I miss you. And you see punches coming and you can get away quick enough…” In an interview with the When Life Gives You Parkinson’s podcast, Muhammad Ali’s daughter Rasheda Ali Walsh, shares that the journey for diagnosis for her Dad was not much different from most. “I was told that a lot of doctors misdiagnosed him because he was so young and a lot of people thought he was just kind of remnants from the boxing career,” she said. Ali’s first symptom was a tremor in his thumb, he started to move slower and then after that his voice softened and speech began to slur. Rasheda says accepting the diagnosis also was not easy for her Dad, “My dad felt that everything happens for a reason and I know how cliche that may sound. But he was, of course, distraught when he was diagnosed.” Rasheda says he shied away from public speaking in the 80’s when his voice started to be impacted by the disease. “You know, his mouth was something that made him a lot of money and made him dynamic. And, you know, when he started to speak a little softer, he got a little insecure about speaking,” she said. Ali eventually accepted his diagnosis and his attitude went from insecure to realizing he need to grab a hold of it full force to see what he could do with it to help change the world. There is something comforting to hear about the struggles Muhammad Ali had in acknowledging initial symptoms, getting diagnosed, accepting the diagnosis, figuring out who to tell and when tell them, and even wrestling with the concept of when to stop working. These are issues and decisions we all share with “The Greatest.” Either Ali was cut down to be seen as human or we all have been lifted up and are doing a whole lot better than we think. 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 If you want more information on the studies around pugilistic Parkinson’s you can find the information in the Journal of Neuropathology and Experimental Neurology through an article titled “Lewy Body Pathology and Chronic Traumatic Encephalopathy Associated With Contact Sports Thank you to… NBC’s Tonight with Jack Parr 1963 BBC’s “Parkinson” with Michael Parkinson, 1978 BBC Documentary “One Punch Too Many” David Letterman, World Wide Pants 1984 Phil Donahue, Multimedia Inc., 1990 Diane Sawyer, ABC News NBC’s Today Show, NBC News, Matt Lauer and Savannah Guthrie HBO Sports, “Inside Sports” and Bryant Gumble And thank you to our special guests: Rasheda Ali Walsh – Rasheda is the Author of “I’ll hold your hand so you don’t fall,” It’s available on her website www.RashedaAli.net. She served as Honorary Chairperson for the Florida Coalition To Cure Parkinson’s Disease. She serves as Patron for the EPDA, the Muhammad Ali Parkinson’s Center at Barrow Neurological Institute, and serves as Advisory Board Member of BrainStorm Cell Therapeutics, a leading Biotech company. Dave Clark, sports presenter on Sky Sports News Our presenting partner is Parkinson Canada 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 and funds for the Cure Parkinson’s Trust. Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey folks, its Larry. We need to chat. A few Thursday’s ago, I was sitting in my office having a meeting and suddenly my nose begins to bleed. Weird. I grab some tissues. I’ve had bloody noses before and they stop in a few minutes. This was a gusher and it wasn’t stopping. 40 minutes into the bloody nose we called 9-1-1. Medics came, put a plastic clamp on my nose and took me to St. Paul’s Hospital. After a few hours the bleeding stopped. The ER doc asked a few questions and sent me home. I had 10 nose bleeds over the course of the next 4 days, but continued working through my packed schedule. I flew to Toronto for meetings the Monday after. I had three nose bleeds that day. Tuesday, during a meeting I had one and then as we were wrapping up dinner I had another. I had kept my nose clamp from the ambulance ride, so I was expert at dealing with it. At dinner, I said folks, “It’s time for me to leave. As you can see I have a stylish nose clamp, which means my nose is bleeding and it is time for me to catch an Uber.” A colleague of mine, Mike, rode with me. We were at the same hotel. He said, “I’m right upstairs if you need me.” I said thanks and assured him I was fine. I wasn’t fine. 10 minutes later I send him an email no one wants to get, the subject line read, “Help 911.” Within those 10 minutes, the blood had begun to gush out both nostrils through the clamp and I started to cough, choke and gag on it. I could hardly catch my breath. I dialed 9-1-1. After they confirmed an ambulance was on its way, I called my wife Rebecca in tears, choking on my on blood, in full panic attack mode I told her I loved her. My colleague Mike arrived a minute later. Rebecca and Mike exchanged information. Mike kept her in the loop the whole night. He rode in the ambulance with me to St. Michael’s Hospital. Meanwhile, I’m still bleeding, still coughing up blood and spitting out big clots. It was gross. The doctor sprayed some anti-decongestion in my nostrils to help close the blood vessels. She then shoved a big wad of gauze up my nose with numbing and clotting medication. It took three or four hours for the bleeding to stop. I stayed in Toronto for two extra days, resting in a hotel, nursing my continuing bloody nose. I emailed my neurologist who said; A) It’s not Parkinson’s related. B) It’s not Parkinson’s medication related. C) Get off the aspirin. At some point, I was told it was a good idea to take a low dose aspirin once a day to prevent stroke and heart attack. After seeing my GP, she said, “Yeah, were not recommending that anymore.” Getting off the aspirin and out of the sky was the key to controlling the nose bleeds. I had been on 13 roundtrip flights in 16 weeks. Too much recycled air will dry out your nose. The aspirin counter-acted the blood platelets clotting ability. Both my GP and Neurologist have also suggested I need to slow down. So, I’m slowing down. I am peeling back commitments and travel. I’ll still do some, but not as much. I need to say no more, know my limits, and admit out loud that I can’t do everything. It starts with the podcast. Effective in December, we will release a new podcast every other week. We’ll take two weeks off at the end of the year and be back on January 8th. 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… Rebecca Gifford, my wife and partner in Parkinson’s Our presenting partner is Parkinson Canada 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 and funds for the Cure Parkinson’s Trust. Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s, I put the old adage “laughter is the best medicine” to the test. I go through improvisational comedy training and perform live on stage for the first time in nearly thirty years. Plus, I connect with four people who live with Parkinson’s; Glenn Lurie, Kitty Fitton, Phil “Badger” Smith and Paul Mayhew-Archer. They all have turned to stand-up comedy after their PD diagnosis. Paul Mayhew-Archer, star of the one-man show “Incurable Optimist,” admits he gets a pleasant dopamine rush on stage, but he says it’s not the same as medicine, “So, I mean, they say that laughter is the best medicine. And, you know, it's rubbish, because in my case Sinemet is the best medicine. But laughter is certainly pretty high up on the list.” Sinemet is the brand name of Carbidopa-Levodopa, the gold-standard treatment for Parkinson’s disease. Aside from the dopamine hit, comedian Phil “Badger” Smith has discovered it helps with some specific symptoms of Parkinson’s, “Apart from anything else helps of practicing speech and confidence and helps to battle depression and anxiety. Because you're performing and if people are laughing at your jokes, it gives you a real buzz.” I participated in a series of three workshops called “Improv for Parkinson’s” at Vancouver Theatre SportsImprov Comedy Institute, which concluded with a live performance. For me, performing on stage was such a rush, it triggered a bloody nose as soon as I stepped on stage and heard the applause and roar of the crowd. I had to excuse myself before introductions. I quickly shoved tissue up my nostril and clamped my nostrils shut and returned to the stage. After all, they show must go, but more importantly, improv training taught us to roll with the punches. With Parkinson’s, improv and life, the more you can be in the present moment and react to what is right in front of you, the easier it all becomes. Improvisational comedy and Parkinson’s was the focus of a first-of-its-kind research projectat North Western University in 2017 in conjunction with the Second City School of Improvisation in Chicago. The results show that despite common amotivation and symptomatic apathy and unlike therapies and exercise classes, the improv workshops were well attended and enjoyed among patients of PD of varying ages and disease severity. In regards to measures of efficacy, the only variable that improved significantly was the change in UPDRS part II, which focuses on how difficult the activities of daily living are for people with Parkinson’s. Researchers believe this preliminary finding may be a result of the humor and games that aimed at improving communications skills, stigma, anxiety and quality of life. More research will need to be done before the positive impacts of improv on Parkinson’s are confirmed. 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… Vancouver TheatreSports Improv Comedy Dan Dumsha Improv performer, instructorand executive coachhas a website www.dandumsha.comand can be found on Facebook @Dan.Dumsha, twitter@dandumshaand Instagram @dandumsha Johnny Kerrigan is in the Vancouver TheatreSports rookie league. My Improv Troupe Norm Blain Creston Froats Peter Jarvis Geoff Cohen Richard Froese John Hougan Glenn Lurie is living in North Carolina. Here is a link to the articlethat first peaked my interest in Glenn. You can follow him on Facebook @Glennluriecomedianand twitter @GMLurie. Kitty Fitton can be found at her website www.kittyfitton.comand you can follower her on twitter @kitty_fitton Phil “Badger” Smith on twitter @phil_badger Paul Mayhew-Archer has a website http://mayhew-archer.com/and is on twitter @mayhewarcher Rebecca Gifford, my wife and partner in Parkinson’s, who always laughs at my jokes. Our presenting partner is Parkinson Canada 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 and funds for the Cure Parkinson’s Trust. Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, we discuss what it is like to a get a diagnosis of Parkinson’s in the prime of your life when you are happily married with four kids and had been anticipating a return to full time work after a tour of duty has a full time Mom. On her website, www.kittyfitton.com , she says, “I am a comedian, Aviation fiend, Air-Scout leader, mother, wife, friend, and I have Parkinson’s Disease. It’s the last thing that’s the real kick in the guts, but also the thing that has helped to transform my life from humdrum to extraordinary.” What I like so much about Kitty is that she is real, authentic and vulnerable. I relate a lot to her story. Kitty was diagnosed with Parkinson’s in early 2016. Originally, from North of England, Kitty and her husband Craig have been raising their four kids in New Zealand since 2011. When the diagnosis came, Kitty admits she cried for days. A visit from a Parkinson’s New Zealand associate gave her the information and inspiration she needed to move forward. Kitty admits though, she and Craig often say they like the taste of sand, because all too often they put their heads in the sand when it comes to the realities of Parkinson’s disease. In the past year, if they are being honest with each other about the PD, Kitty and Craig have noticed changes. Her gait is more pronounced and she uses poles for tramping. They both also notice her face is a bit droopier and more masked than a year ago at this time. Kitty remembers a time, pre-diagnosis; they used to sit out back, with a glass of wine, under the stars, planning grand tours of Europe. But, at some point that stopped dreaming about the future and now fear it or don’t discuss it at all. After all, when it comes to future planning, fears of disease progression can be paralyzing. In a recent conversation, Kitty says Craig lamented that because of the Parkinson’s they could not plan anymore. She argued, “I can still do stuff.” Admittedly, she is slower, but she still dreams, still plans and still has a lot of living to do. That being said, Kitty does fear the days when she will need more assistance, “I’m terrified of losing cognitive ability and of not being independent.” However, she has warned her husband about one thing, “If you ever tell someone you are my carer in public, I will punch you.” These honest, tearful and hysterical moments of conversation between spouses, exchanging fears and assumptions, are happening with couples and families dealing with Parkinson’s around the world. I thank Kitty sharing her story and for giving us a peek inside her family life. No matter how different our journeys may be, the conversations couples and families have through tears and fears is universal and makes us all feel a bit more normal when we realize we aren’t the only ones who stopped dreaming about vacations or who’ve come to the conclusion that denial tastes a lot like sand. If you have a comment or question about the podcast, you can email [email protected] 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… Niki Reitmayer for picking up the slack, while I recover from some random non-PD health stuff. Kitty Fitton. Follow her on twitter @kitty_fitton, or go to her website https://www.kittyfitton.com/ The book from Parkinson’s New Zealand that Kitty referenced is available as a PDF download on the web. Just click here “Guide to Newly Diagnosed.” For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/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. Learn more about your ad choices. Visit megaphone.fm/adchoices

This podcast and these show notes talk about suicide. If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living. A full list of suicide hotlines from around the world can be found here. 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. On Monday, August 11, 2014 Robin Williams died by suicide. While he had has demons in drugs, alcohol and depression over the years, those are what killed him. Williams, diagnosed with Parkinson’s disease in May of 2014, was suffering from severe symptoms that would later be determined to be from Lewy Body Disease. In this Extra Dosage episode of When Life Gives You Parkinson’s we discuss the life and death of Robin Williams. We discuss his roles, friends, diagnosis, symptoms, decline, suicide, and the impact he’s had on all of us. His final year is details in a REELZ documentary in the U.S. called “When the Laughter Stops: Robin Williams.” Award winning Entertainment Reporter and the films Executive Producer, Dylan Thomas, is interviewed in this Extra Dosage episode of When Life Gives You Parkinson’s. We talked about how Robin created a mask so realistic no one knew he was suffering. “We never saw it. It wasn't in front of our eyes. And that's the great irony of the situation. Someone could achieve so much. He was a winner of an Academy Award, six Golden Globes, two Emmys, five Grammys, more than perhaps anyone could have ever imagined in a career. Yet at the same time, behind the scenes, there were issues in his private life that we didn't really know about. And that was, you know, his health condition, the fact that he had Parkinson's and that he had Lewy body syndrome.” His widow, Susan Schneider Williams, penned a letter to Nuerology.org titled “The Terrorist Inside My Husband’s Brain.” In it, she details some of the darkness Robin was facing. “Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.” No one can bring Robin back. But his films and specials live on and make us laugh so hard it feels like exercise. That’s probably Robin’s last poke at Parkinson’s. Even in death, he produces as much natural dopamine in brains with and without Parkinson’s than anyone or anything else. If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living. A full list of suicide hotlines from around the world can be found here. If you have a comment or question about the podcast, you can email us: [email protected] 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… Paul Mayhew Archer, writer & producer http://mayhew-archer.com/ Neurology.org – Read Susan Schneider Williams full letter “The Terrorist Inside My Husband’s Brain.” https://n.neurology.org/content/87/13/1308.full Dylan Howard, American Media REELZ Channel CBS News, NBC News, ABC News, CNN, Fox News CBS This Morning For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s, Larry Gifford talks with three friends with Parkinson’s who set out to test the physical, mental, emotional, and spiritual limits of the human body after diagnosis. What they discovered was that challenges in life, no matter how extreme, are easier and more rewarding when you build a community of support around you and allow yourself to be vulnerable enough to ask for help. For many people with Young Onset Parkinson’s Disease (YOPD), the Parkinson’s journey can start as a lonely, aimless, hopeless, and dark ride. It takes time to begin to see the light. A year after his diagnosis in 2011, Tim Hague, then 45, applied for the first season of Amazing Race Canada with his son and won. His life and advocacy since then is quite an unsolvable dichotomy for Tim,“Parkinson's has given me far more than it's taken,” Hague says. “I mean, Parkinson's gave me the Amazing Race, The Amazing Race gave us a huge financial payout in winning it, right? It was in winning the race that threw open the door to speaking and that threw open the door to writing a book. And I mean, Parkinson's has been a massive blessing in our life. And that's really difficult to wrap your head around because I hate Parkinson's. I hate it with a passion. There's not been a single day I've ever woke up and thought I was happy to have Parkinson's.” Tim is the founder of U-Turn Parkinson’s, a Canadian charity with a mission to empower people living with Parkinson’s in their pursuit of wellness. Jimmy Choi was 27 when he was diagnosed. He spent eight years denying his Parkinson’s, before he began to take it seriously. He started with a walk around the block. That turned into a jog, a run and eventually he ran a 5K. In the 8 years that followed, he has competed in over 100 half-marathons, 15 marathons, an ultramarathon and raised over $250,000 for Parkinson’s research. His advocacy hit new heights when he appeared twice on the NBC TV show American Ninja Warrior. The further he gets along on his journey, the more realizes he is not alone, “I think for a person with Parkinson's, it all starts with being open, accepting, really comfortable telling their story and not afraid to ask for help. You know, don't be that stubborn person. Don't be Superman.” Bret Parker, 54, is the Executive Director of the New York Bar Association. He’s also known as the guy with Parkinson’s who ran seven marathons on seven continents, in seven days. “You know, it really, really was tough. I mean, it was really tough at times.” Parker painfully remembers struggle to finish the races. However, he did have an epiphany through it all, “I also realized that there's a point when relying on people is okay. I'm a very independent person. All of these events that I've done have been a part of: individual races and individual activities. You know, I'm not much of a team sports player, but it's okay to have people supporting you and cheering you on and leaning on them.” Parker’s personal mantra is “Do epic shit!” And he does. Each year, he raises money for Parkinson’s research by competing in extreme physical activities from skydiving and triathons to 100 mile bike rides in severe conditions. He’s personally raised more than $500,000 for the Michael J Fox Foundation. 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… Tim Hague can be found at www.TimSr.ca and on Facebook, Twitter and Instagram, he is @timhaguesr. He is also the founder of U-Turn Parkinson’s charity based in Winnipeg, Manitoba in Canada. Sheryl Hague, Tim’s amazing wife and partner in Parkinson’s. Jimmy Choi is on The Michael J. Fox Foundation for Parkinson’s Research Patient Council. Follow him on Twitter @JCThr33, check out his Facebook page or follow him in Instagram @JCFoxNinja. Bret Parker is the Co-Chair of The Michael J. Fox Foundation for Parkinson’s Research Patient Council. He’s @bretparker on Twitter. , Rebecca Gifford, my amazing wife and partner in Parkinson’s. Our presenting partner is Parkinson Canada 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 and funds for the Cure Parkinson’s Trust. Learn more about your ad choices. Visit megaphone.fm/adchoices

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: [email protected] 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 Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of When Life Gives You Parkinson’s I talk with three friends about Deep Brain Stimulation. Becca Miller is contemplating it, David Sangster just had it and Jim Smerdon had it five years ago. “You hear everything,” said Jim Smerdon of Vancouver, B.C. when I asked what he heard when doctors drilled a hole through his skull and into his brain. “It was the clearest memory I’ve ever had of anything of my life.” Jim was awake for the first five hours of Deep Brain Stimulation to treat his Parkinson’s disease. My neurologist told my wife and I that if my motor symptoms and dyskinesia from carbidopa-levodopa do not level off in six months, we will add my name to the DBS evaluation list. The wait time for evaluation in British Columbia is three years and currently there is just one doctor who performs surgery here. “Deep Brain Stimulation is considered the most commonly performed surgical treatment for Parkinson’s disease,” said Jamie Hamilton, senior associate director of research programs for the Michael J Fox Foundation. Hamilton explains that DBS is an invasive procedure which implants electrodes deep in the brain. The electrodes are controlled by a neurostimulator which is surgically implanted into his chest and sends electric impulses to specific targets in the brain. Becca is a single mom of a 7-year old. She is scared to have DBS while her daughter is so young. But, she understands the benefits, “…that sounds just amazing. It feels like in some ways, you know, in some ways it's like a last resort and in other ways it feels like a reset. And a gift of time.” For David, it has been life changing. He’s back to playing with his kids, being an equal partner to his wife and playing piano. “It’s amazing,” says David. “I can be there when my kids need me - every time. (I can) take them to school, drive the car, and make them cereal. It’s also being there for my wife and being more of a person than I used to be.” Jim was able to completely come off the carbidopa-levodopa for a year. But, his wife Deana Grinnell says he’s back up to 8 or 9 pills per day. That’s fewer than the 20 or so he was on prior to surgery by the dyskinesia is back. “His disease is progressing,” Deana said. “It’s effecting his balance. His speech is getting softer. It’s just marching on.” 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… Becca Miller Jim Smerdon and Deana Grinnell David and Jane Sangster Jamie Hamilton, Senior Associate Director of research programs for the Michael J. Fox Foundation www.michaeljfox.org Rebecca Gifford, my amazing wife. Henry Gifford, Captain Awesome (Our son). Our presenting partner Parkinson Canada offers more information on DBS and advanced srugerycal therapies for Parkinson’s here https://www.parkinson.ca/event/advanced-surgical-therapies-dbs-and-duodopa/ or 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Every six months, I visit Dr. Jonathon Squires at UBC’s Djavad Mowafaghian Centre for Brain Health. He is my neurologist and movement disorder specialist. Last week, my wife Rebecca and I sat down with him after our examination and interviewed him for the podcast. We talk about my symptom progression, my medicine regiment, DBS, biomarkers, what a cure will likely look like, stem cells, and the role stress might play in disease progression and symptom management. Even though my motor symptoms are beginning to appear on both my right and left side, in general the tremor and gate issues are stabilized year over year. I am however collecting non-motor symptoms with gusto including exhaustion, anxiety, active dreaming, insomnia, hot flashes, excessive sweating, constipation and bladder urgency. I regularly have difficulty recalling proper nouns and names or short-term instructions, weekend plans, etc. Rebecca noted to Dr. Squires that when I’m “off,” I often will be in a zone or bubble completely unaware of what’s happening around me and not hearing what she says. I am also dealing with neuropathy, dystonia and dyskinesia. In an effort to tackle a few of the more annoying symptoms, Dr. Squires increased my carbidopa-levodopa again. I am now taking five times a day, every four hours, with an optional sixth time in the middle of the night. He also added a sedative, an anti-depressant, a laxative, and Vitamin B Complex. All in – vitamins, supplements, medications and probiotics, I am swallowing more than 200 pills and capsules a week. The good news is medicine works and allows me to be a husband and ad, work, advocate and live life. Due to the increased meds and dyskinesia, we begin to talk about deep brain stimulation (DBS) with Dr. Squires, what the time line is for me before needing DBS, and what risks I may have. If you have a comment or question about the podcast, you can email us: [email protected] 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… Dr. Jonathon Squires, Movement Disorder Specialist, Djavad Mowafaghian Centre for Brain Health at University of British Columbia Rebecca Gifford, my wife. 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

When Joy was 16-years old, she fell in love with Leslie. Back then, he smelled good. “He had a wonderful male musk smell,” she says. Dr. and Mrs. Leslie and Joy Milne were later married. Les became a consultant anesthetist and she was a nurse practitioner. Sixteen years later, his body odor changed – for the worse. He smelled off, overly musky and unpleasant. Joy even nudged him to wash more. Twelve years after that, he was diagnosed with Parkinson’s disease. At their first support group meeting, Joy realized the other people with PD smelled just like Les. Bravely, Joy asked researcher Tilo Kunath why no one had researched the smell of Parkinson’s. Tilo was shocked. He had never heard anyone talk about an odor of the disease. Neither had anyone else. Six months after that encounter, a colleague told Tilo that many cancers have smells, which made him think Joy maybe on to something. Tilo teamed up with Perdita Barran, a professor of mass spectrometry at the University of Manchester, and started to test Joy’s super smeller. They discovered she was smelling sebum, an oily secretion on everyone’s skin that is over-produced in people with Parkinson’s disease. Next, they focused on the molecules within the sebum. “We found, if we compared the samples from people with Parkinson’s with the people without, there were significant differences.” Barren says they found 17 compounds that were different, “Of those, four were significantly different and they always varied in the same way.” Barren and Kunath used that information to create a model which allows them to test anyone’s sebum at any time and predict, with 90% accuracy, if that person has Parkinson’s. The novelty of “The woman who smells Parkinson’s” initially brought ridicule and doubt from others in the scientific community, but as more and more research is being conducted, supporters are coming out of the closet. Joy feels some vindication, but knows there’s more work to be done on convincing the medical community that diseases have distinct odors. “How do elephants in a tribe know an elephant is ill and they protect it? How does a wolf know who is in the pack and is ill? Animals smell when they are ill. Sharks do as well. They have a super sense of smell. We are sentient beings. So why are we not accepting of it?” There currently are no biological tests or measurable indicators for Parkinson’s disease. Diagnosis of PD is a subjective call by a neurologist based on medical history, symptoms, a physical examination and neurological tests. It is imperfect at best. The research around the smell of Parkinson’s is an exciting and promising approach to finding that elusive biomarker. Additionally, testing sebum levels is quick, easy, cheap and painless making it a great option for monitoring disease progression and medication effectiveness, especially for people in rural areas who rarely see their neurologist. 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… Joy Milne, Super Smeller. On twitter she’s https://twitter.com/stumpw0rk50 Tilo Kunath, reader in regenerative Neurobiology, Centre for Regenerative Medicine. Follow Tilo’s lab on Twitter https://twitter.com/KunathLab. Follow the Centre for Regenerative Medicine on twitter https://twitter.com/crm_edinburgh Perdita Barran, a professor of mass spectrometry at the University of Manchester. Watch her TedX Palo Alto talk here. Follow her on twitter https://twitter.com/perditab APOPO, discover the miracle of hero rats here: https://www.apopo.org/en Watch Founder of APOPO, Bart Weetjens give his Ted Talk here https://www.ted.com/talks/bart_weetjens_how_i_taught_rats_to_sniff_out_land_mines?language=en 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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: [email protected] 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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: [email protected] 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 inf

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: [email protected] 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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Pa

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. T

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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 Learn more about your ad choices. Visit megaphone.fm/adchoices

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. Learn more about your ad choices. Visit megaphone.fm/adchoices