When Life Gives You Parkinson's
Larry Gifford has Parkinson’s disease, and he wants to talk about it. When Life Gives You Parkinson’s chronicles Larry’s journey following diagnosis at age 45, but he knows he’s only part of the story. The podcast gives voice to the fascinating people that make up the Parkinson’s community and beyond — his family, his fellow people with Parkinson’s, care partners, advocates, researchers and healthcare providers. Through these interviews, the podcast informs and inspires others to share their own stories revealing the challenges and growth offered by the Parkinson’s journey. Larry is a seasoned broadcaster and the podcast is c...
Wed, March 05, 2025
PD Avengers address REM Sleep Behavior Disorder (RBD)
PD Avengers co-founders Soania Mathur and Larry Gifford discuss the challenges of REM Sleep Behavior Disorder (RBD), a condition often associated with Parkinson's disease. Larry shares his experience of waking his wife up multiple times due to vivid, disturbing dreams and physical movements during sleep. Despite not having hit anyone yet, he described grabbing things and pulling a lamp toward them, which causes objects to fall. He also mentions how his wife, who sleeps in another room, checks on them during these episodes for safety. Soania relates to this experience, noting she developed RBD after their Parkinson’s diagnosis. She describes having vivid and violent dreams, often feeling anxious. She highlights the unpredictability of RBD, which disrupts her sleep and contributes to daytime fatigue. Both speakers express concern for their care partners, as they experience anxiety and stress from the disruption of their own sleep while trying to ensure safety. The conversation touches on a survey that revealed the significant stress care partners experience due to sleep disturbances in people with Parkinson’s. The speakers acknowledge the importance of sleep for both the individual with Parkinson’s and their care partner, noting that a lack of sleep adds stress and affects overall well-being. They conclude by discussing the ongoing research and the continuous struggle that Parkinson’s disease presents. LINKS: SLEEP SURVEY https://www.pdavengers.com/sleepsurvey PDAVENGERS: www.pdavengers.com SPARK THE NIGHT: https://sparkthenight.org Learn more about your ad choices. Visit megaphone.fm/adchoices
Wed, February 05, 2025
PD Avengers Weekly Chat - Balancing Life and PD
The PD Avengers discuss the challenges of balancing life with Parkinson's disease, emphasizing the impact of Deep Brain Stimulation (DBS) on daily routines. Both Tim Hague and Larry Gifford highlighted the necessity of daily naps and improved sleep post-DBS, though daytime sleepiness persisted. They shared personal strategies like improv for maintaining positivity and energy. Traveling with DBS was noted as challenging, with issues like being patted down at airports. They promoted the PD Avengers community, encouraging sign-ups to amplify their voice in ending Parkinson's. The conversation also touched on practical tips like using the sunflower card for hidden disabilities at airports. www.pdavengers.com https://sparkthenight.org https://hdsunflower.com/ ASK A QUESTION: https:///www.speakpipe.com/pdavengers Learn more about your ad choices. Visit megaphone.fm/adchoices
Tue, January 28, 2025
PD Avengers: What have you learned about yourself since your diagnosis?
PD Avengers co-founders Larry Gifford, Soania Mathur, and Tim Hague Sr. discussed various topics related to Parkinson's disease, including recent news and advancements in Deep Brain Stimulation therapy. They also shared personal experiences and lessons learned since being diagnosed with Parkinson's, emphasizing the importance of self-advocacy, mindfulness, and finding positivity in the face of adversity. The conversation ended with a focus on what they've learned about themselves since their diagnosis. Ask a question: www.speakpipe.com/pdavengers Learn more about your ad choices. Visit megaphone.fm/adchoices
Fri, January 24, 2025
PD Avengers share three things to focus on in the new year
In the PD Avengers Weekly Chat titled "3 Things to Make 2025 Great!", co-founders Larry Gifford, Soania Mathur, and Tim Hague discuss three key actions to enhance the well-being of individuals with Parkinson's disease in the coming year: Engage in Regular Exercise : Tim emphasizes the importance of consistent physical activity, citing research that shows 30 minutes of intense exercise, five days a week, can slow the progression of Parkinson's. He shares his personal routine at U-Turn Parkinson's, which includes activities like Tai Chi, dance, and functional fitness classes. Build a Supportive Community : Larry highlights the value of connecting with others to combat isolation. Engaging with people facing similar challenges can significantly improve one's quality of life. He notes that having a reliable support network, like his co-founders, has been beneficial for him. Participate in Research Initiatives : Soania encourages involvement in research, stressing that patient participation is crucial for developing better treatments and finding a cure. Opportunities range from enrolling in clinical studies to fundraising or completing online questionnaires. She mentions the Fox Insight study as an example of a valuable research project that involves filling out information online. Additionally, they discuss the World Parkinson Congress's year-long fundraiser aimed at raising $25,000 for Young Onset Parkinson's travel grants for the upcoming congress in Phoenix in May 2026. They also congratulate Michael J. Fox on receiving the Presidential Medal of Freedom and acknowledge his continued advocacy for ending Parkinson's disease. For more information about the PD Avengers and their initiatives, you can visit their official website: PD Avengers To learn more about the World Parkinson Congress and their fundraising efforts, visit: www.wpc2026.org For more information about the Fox Insight study, visit: www.foxinsight.com Learn more about your ad choices. Visit megaphone.fm/adchoices
S7 E1 · Fri, September 27, 2024
Choosing DBS
Supported by Abbott. Podcast Summary: Overview of DBS for Parkinson's Disease In this episode, we discuss Deep Brain Stimulation (DBS), a therapy used for over 20 years to manage Parkinson's symptoms when medications aren't enough. DBS involves surgically implanting electrodes in the brain, connected to a battery pack in the chest, to improve motor symptoms and normalize brain activity. Patient Stories: Ed McQuaid , diagnosed in 2018, had DBS in 2023. He went from taking 8-10 pills daily to none, regaining independence in activities like dressing and playing golf. Margaret Burns-Kohn , diagnosed in 2015, also had DBS in 2023. She eliminated severe dyskinesia and regained the ability to perform daily tasks like tying shoelaces. Abbott Liberta RC System Features: Dr. Mitesh Lotia Smallest rechargeable battery Wireless charging, just 15 minutes a week Remote programming and precise stimulation with directional leads Key Points: DBS isn't just for advanced Parkinson's—earlier intervention can help. Surgery doesn't limit physical activities, and most find it less daunting than expected. Next Steps: Visit lifewithdbs.com to connect with patient ambassadors. If interested, discuss DBS with your neurologist and consider scheduling an evaluation. Full benefits are typically seen 4-6 months post-surgery. Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 Enull · Wed, March 20, 2024
From Awareness to Action: The Final Episode
In this bittersweet finale of "When Life Gives You Parkinson's," we reflect on the incredible journey we've shared over 124 episodes. From the very first episode to this one, we've laughed, cried, and learned together. Countless guests have graced our show, sharing their stories, insights, and expertise, making each episode a treasure trove of knowledge and connection. Hosts Larry and Rebecca take a moment to express gratitude to everyone who has contributed to the success of the podcast. Whether you've been a guest, a listener, or a supporter, your presence has made a difference. Through the highs and lows, the triumphs and challenges, we've built a community bound by a shared mission: to raise awareness, offer support, and ultimately find a cure for Parkinson's disease. As we bid farewell to "When Life Gives You Parkinson's," we carry with us the memories, the laughter, and the friendships forged along the way. Thank you, everyone, for being part of this incredible journey. Though this may be the final episode, the impact of our collective efforts will continue to resonate far beyond the confines of this podcast. From all of us at "When Life Gives You Parkinson's," thank you, and be well. EMAIL US: Larry@PDAvengers.com JOIN PD AVENGERS: www.pdavengers.com Thanks to Rebecca Gifford, Niki Reitmayer, Chris Duncombe, Dila Velazquez, Rob Johnson, Greg Schott, and Corus Entertain. Special thanks to Parkinson Canada who has been there supporting the podcast since the beginning. Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E8 · Tue, January 23, 2024
Dialing in DBS and Sorting Through the Data with Rune Labs CEO Brian Pepin
In the latest episode of "When Life Gives You Parkinson’s," Larry Gifford shares insights into his Deep Brain Stimulation (DBS) journey alongside his partner, Rebecca Gifford. Larry expresses excitement about the positive impact of DBS on his symptoms, noting improvements in walking, voice, and overall confidence. He recommends Dr. Jon Stamford’s new DBS DIARY for a comprehensive view of the DBS dilemma. The episode features an interview with Brian Pepin, CEO of Rune Labs, the technological interface for Medtronic's DBS system. For those considering DBS, Larry invites questions through the show notes or via email. The podcast, a production of Curiouscast, is sponsored by PD Avengers, urging listeners to participate in SparktheNight.org and share the podcast for Parkinson’s awareness. The episode concludes with a reminder to stay positive, exercise, and keep listening until the next installment. Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E7 · Wed, November 22, 2023
DBS: I Helped Surgeons Operate on my Brain
In this episode of "When Life Gives You Parkinson’s," Larry and Rebecca dive into Larry's recent Deep Brain Stimulation (DBS) surgery. It's the culmination of their DBS series, showcasing moments before and after the procedure. (Episode six of our 2023 DBS series) Larry shares his experiences, from the anticipation of the surgery to post-surgery reflections. He describes the fears he had about the head frame and the surgical process itself, emphasizing the involvement of Nurse Nancy and Dr. Honey. The detailed account covers the electrode installation, the testing of potential targets for relief, and the moments of consciousness during the surgery. Post-surgery, Larry discusses the "Honeymoon" period, a phase of initial relief and remarkable changes. He talks about the reduction in medication intake, improved bodily functions, and sensory experiences like regaining his sense of smell. Despite these positive changes, he notes signs of needing to gradually reintroduce medication as he experiences disorientation and fatigue. Larry and Rebecca conclude with observations of minor personality changes and a heartfelt conversation about what comes next. It's a personal, insightful episode that offers a firsthand account of the realities and changes that come with DBS surgery for Parkinson's Disease. MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Twitter: @ParkinsonsPod Thanks to Curiouscast Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Additional thanks to... PD Avengers – We are building a global alliance to end Parkinson’s. Join us . Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E6 · Wed, October 18, 2023
DBS Pre-Op Talks: Love and Transition
Season 6, Episode 6 SHOW NOTES Oct 17, 2023 TITLE: DBS Pre-Op Talks: Love and Transition Podcast Notes: In the latest episode of the When Life Gives You Parkinson's podcast, hosts Larry and Rebecca Gifford discuss the upcoming Deep Brain Stimulation (DBS) surgery. The surgery is scheduled for October 24th, 2023, at UBC Hospital in Vancouver, British Columbia, Canada. Larry and Rebecca take the audience through their preparations, discussions, and feelings as the surgery date approaches. They touch on a wide range of topics, including their emotional and practical preparations, managing their son Henry's needs, and the changes in household responsibilities. They also discuss the potential outcomes of the surgery and what they hope to achieve. They emphasize the importance of quality-of-life improvements and share their gratitude and love for each other. MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Twitter: @ParkinsonsPod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to PD Avengers – We are building a global alliance to end Parkinson’s. Join us . Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E5 · Wed, October 11, 2023
Brains and Drills: The Wild World of DBS Surgery
In this episode, Larry and his partner, Rebecca, discuss what to expect right before, during, and after DBS surgery. The surgery is scheduled for October 24th, 2023, and this episode was recorded about two weeks before the surgery. The episode covers the pre-surgery preparations, including the need to stop medication before the surgery, and an informative description of the MRI process. Nurse Nancy, who works at British Columbia's DBS clinic, provides insights into the surgery day, which involves anchoring a frame to the patient's head, drilling small holes in the skull, and testing electrode placement to ensure optimal DBS results. The conversation also touches on battery replacement and the possibility of technology upgrades over time. Nurse Nancy emphasizes the importance of closely monitoring the battery and making adjustments as needed. The recovery period is discussed, with a recommendation to take it easy for about six weeks to allow the brain to heal before turning on the stimulator. The potential reduction in medication is mentioned, with an emphasis on gradual adjustments to ensure a balance between symptom control and medication side effects. The episode provides a detailed and insightful overview of the DBS procedure and what patients can expect throughout the process. Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E4 · Wed, October 04, 2023
Navigating Deep Brain Stimulation: The Pros, Cons, and Realities
In this episode of "When Life Gives You Parkinson's," Larry Gifford and Rebecca Gifford delve into the world of Deep Brain Stimulation (DBS), continuing their 2023 series on this treatment option. While sharing their optimism about Larry's upcoming DBS surgery, they also address the importance of discussing the risks associated with it. They present real stories from individuals who've undergone DBS, shedding light on the complexities and varied experiences associated with this treatment. Kim Cornelis shares her personal journey, highlighting both the potential benefits and challenges of DBS. The episode also explores alternative treatments, like light therapy, and emphasizes the significance of open communication about the emotional and psychological impact of DBS, including discussions about suicidal ideation. Join Larry and Rebecca as they provide valuable insights and a balanced perspective on the choices facing individuals with Parkinson's disease. They emphasize the importance of well-informed decisions, emotional support, and understanding within the Parkinson's community. The podcast aims to raise awareness about the mental health aspects of living with Parkinson's and undergoing treatment. If you have no one to talk to about your suicidal thoughts, call your country's suicide hotline. INTERNATIONAL SUICIDE HOTLINES In Canada, it's 1-833-456-4566. In the U.S. Dial 988. In Australia, 131-114. And in the UK dial 0800 689 5652. KEY LINKS Thank You to: Kim Cornelis, PwP, Portland, Oregon Becca Miller, PhD, PwP Parkinson’s Resources of Oregon Dr. Wayne Markman, founder & CEO of Symbyx Biome If you have no one to talk to about your suicidal thoughts, call your country's suicide hotline. INTERNATIONAL SUICIDE HOTLINES In Canada, it's 1-833-456-4566. In the U.S. Dial 988. In Australia, 131-114. And in the UK dial 0800 689 5652. MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod
S6 E3 · Wed, September 20, 2023
Inside Larry's DBS Journey: Meeting the Brain Surgeon
In this episode of "When Life Gives You Parkinson's," Larry and Rebecca dive into Larry's upcoming Deep Brain Stimulation (DBS) surgery. They introduce Dr. Chris Honey, the neurosurgeon who will perform the procedure the brain surgeon. Dr. Honey breaks down what to expect and the possible risks of DBS, stressing the importance of picking the right surgeon and keeping a positive mindset. After the surgery, the plan is to use the DBS device to replicate Larry's best moments on medication, with the hope of eventually cutting down or even ditching the meds. The episode also brings in Tim Hague Sr., who shares his experience with the medication challenge, underlining just how much Levodopa (medication) can make a world of difference for folks dealing with Parkinson's. The podcast wraps up with a chat about making essential medications accessible worldwide and some cool facts about DBS. Check out these videos of Larry's OFF CHALLENGE My Eye Opening DBS "Off Challenge" https://youtu.be/GrlCmrHbtb0?si=PGRaESoYWMt4L5Uc The Power of Levodopa https://youtu.be/Mg91r2hT6p4?si=xFgVhnCSiRX8haLZ Thank You to: Neurosurgeon Dr. Christopher Honey www.DrHoney.com Nurse Nancy at the Vancouver Coastal Health DBS Clinic Tim Hauge Sr. www.TimSr.ca founder of www.uturnparkinsons.org www.pdavengers.com TV Show House Heel & Toe Films Shore Z Productions Bad Hat Harry Productions Moratim Produktions NBC Universal Television (2004-2007) Universal Media Studios (UMS) (2007) The Brain Surgeon - That Mitchell & Webb Look , Series 3 - BBC Two MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Facebook: Facebook.com/ParkinsonsPod Instagram: <a href="http
S6 E2 · Fri, September 08, 2023
My Eye-Opening DBS "Off" Challenge
Hosts Larry and Rebecca Gifford are preparing for Larry's DBS surgery scheduled for October 24, 2023. During the evaluation for DBS surgery. Larry needed to completely go off meds for at least 12 hours. The medical team tests motor symptoms while OFF levodopa and then after taking a dosage and waiting forty minutes repeat the tests. Evaluators were looking for a 40% or more difference in my motor symptoms from OFF to ON. It was truly revelatory to see just how much levodopa, the medication commonly used for Parkinson's, impacts daily life. MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca LEAVE US A MESSAGE: Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons WATCH: Here is a link to see a comparison of Larry ON Levodopa and OFF levodopa Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to PD Avengers – We are building a global alliance to end Parkinson’s. Join us . www.pdavengers.com Learn more about your ad choices. Visit megaphone.fm/adchoices
S6 E2 · Fri, August 04, 2023
Parkinson's Without Borders: Global Unity at the WPC 2023
Donate to the World Parkinson Coalition to support this and future World Parkinson Congresses. World Parkinson Congress 2023 (WPC2023) was a true testament to unity and shared vision. It saw the participation of more than 2,600 people, drawn from 73 countries, all converging under one roof with one common objective: unraveling the mysteries of Parkinson's. This assembly comprised nearly a thousand medical doctors and researchers, 450 registered nurses, therapists, and other clinicians, 685 brave individuals living with Parkinson's, and 260 dedicated care partners and family members. In this episode, Larry and Rebecca share their experiences and discuss some of the most poignant lessons, enlightening stories, and groundbreaking revelations from the congress. They will introduce you people making a difference in their local communities and the world stage. KEY LINKS Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Tight Rope Theatre Improv for Parkinson’s – Sign up NOW for fall classes “Improv for Parkinson’s” – no experience necessary. The PwP Improv Players Arne Johansen Clara Kluge Larry Gifford Miriam Bram Peter Jarvis Shabbir Latif Dan Dumsha, Director -- Improv for Work & Wellness Rosemary Morrison – Improv for Wellness Coordinator Donate to help support the Amazing Rosemary who organized the Improv for Parkinson’s troupe and found a theatre for us to perform in while in Barcelona. PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress WHO iSupport Thanks to: Julie Worden, Brooklyn, NY Dance for PD Jane Williams London, KY Parkinson’s in Motion Amy Lavalle, Brian Grant Foundation <a href="htt
S5 E14 · Wed, May 31, 2023
Harnessing the Healing Power of Infrared Light
Larry & Rebecca Gifford dive into the growing interest and research being conducted around red light and infrared light laser therapy for Parkinson’s disease. In Hamilton, Ontario PD Avenger and care partner Lorna Dueck, a retired radio and TV host, visits Gaitway Physical Therapy. She interviews physiotherapist Orla Hares and research assistant Jenna Sykes. Intrigued, Larry tracks down the CEO of Symbyx Biome, Dr. Wayne Markman of Australia, to discuss the handheld laser being used on the gut and vagus nerve and the infrared helmet – both designed to reactivate the mitochondria inside the dopamine cells. and learns more about the research, science and tradition of therapy of light which dates back to Florence Nightingale in the 1850s. KEY LINKS Symbyx Biome https://symbyxbiome.com/en-ca CEO Wayne Markman featured in Forbes Australia · Find out how this Australian med-tech company is tackling Parkinson’s disease Gaitway Physical Therapy https://gaitwayneurophysio.com/research/ Lorna Dueck https://lornadueckcreative.com/ · Context Beyond the Headlines: Lorna Dueck’s journey through Parkinson’s with her beloved Vern. Her final appearance as host of the TV Show featuring PD Avengers founders Soania Mathur, Tim Hague Sr, and Larry Gifford. APDA Light Therapy for Parkinson’s Disease MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – So
S5 E13 · Wed, April 19, 2023
Biomarker Breakthrough w/ Debi Brooks CEO of The Michael J Fox Foundation
The banner headline on the homepage of the Michael J. Fox Foundation’s website reads “Breaking News: Parkinson’s Disease Biomarker Found.” It sounds exciting, but what does it really mean? Debi Brooks, CEO and cofounder of The Michael J. Fox Foundation, joins Larry Gifford for a chat about what she says is the most important finding the Foundation has discovered in its history. It is already changing the way researchers recruit for some studies. It will lead to faster diagnosis, more customized and personalized treatment, faster, cheaper, more targeted pharmaceuticals, and ultimately it is another step closer to stopping Parkinson's in its tracks. Important Links The Lancet Neurology Article The Michael J. Fox Foundation Coverage of the Biomarker PPMI: The Study That's Changing Everything STAT Article featuring Michael J. Fox's reaction Michael J. Fox Op-Ed for STAT The Presenting Partner is Parkinson Canada ... where people with Parkinson’s are at the centre of everything they do. Parkinson Canada funds critical research, provides information and support, increases awareness and advocates for improved healthcare outcomes for people with Parkinson's across Canada. Learn more at Parkinson.ca Thank you to our promotional partners Spotlight YOPD PD Avengers World Parkinson Congress 2023 in Barcelona Learn more about your ad choices. Visit megaphone.fm/adchoices
S5 E12 · Wed, March 29, 2023
Is Trichloroethylene an invisible cause of Parkinson’s?
Trichloroethylene (TCE). You cannot see it or smell it. It could be in the air you breath, the water you drink, and the food you eat. It is a carcinogen and is linked to clusters of cancer and Parkinson’s. In Journal of Parkinson’s Disease, Dr. Ray Dorsey at the University of Rochester and eleven colleagues have published a research article asking the question “ Is Trichlorethylene an invisible cause of Parkinson’s? ” The authors go on to make a convincing case. Dr. Dorsey joins the podcast to explain the dangers of TCE, how it seeps into ground water, your home, schools, and office buildings, how to protect yourself, and where you can look to see if a TCE Superfund site is near where you live. KEY LINKS BOOK: ENDING PARKINSON’S DISEASE; A PRESCRIPTION FOR ACTION JOURNAL OF PARKINSON’S DISEASE (SCIENTIFIC JOURNAL) Trichloroethylene: An Invisible Cause of Parkinson’s Disease? THE GUARDIAN (UK) Rates of Parkinson’s disease are exploding. A common chemical may be to blame (TCE) Secret files suggest chemical giant feared weedkiller’s link to Parkinson’s disease (Paraquat) NEW YORK NEWSDAY (NY/USA) A NEWSDAY INVESTIGATION: The Grumman Plume; Decades of Deceit CBS MORNING (USA) Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades later LOS ANGELES TIMES (CA/USA) Is a common industrial chemical fueling the spread of Parkinson’s disease? THE TORONTO STAR (ON/CAN) Dry cleaning chemical linked to Parkinson’s in international study (2011/Canada) DAY
S5 E11 · Wed, February 01, 2023
The Promise of Lithium as a Parkinson’s Disease Modifying Treatment
Lithium is more than a drug, it’s the third element on the Periodic Table of Elements. Symbol is LI. It’s lightest metal known to mankind. Lithium-ion batters are used in electric cars. Lithium is also present in vaping devices, many personal electronics such as cell phones, tablets, and laptops, E-Bikes, electric toothbrushes, tools, hoverboards, scooters, and for solar power backup storage. Its origins can be traced back to the Big Bang. For 70 years it’s successfully been used to treat bi-polar disease. Now there’s hope it could be game changing for Parkinson’s disease. Tom Guttuso Jr., MD is a professor of Neurology at the University of Buffalo and Co Director of the Movement Disorder. His new book, titled the Promise of Lithium: How an Over-The-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease.” Dr. Guttuso joins the pod to discuss the potential of Lithium and stopping Parkinson’s. Much Gratitude for your music: Nirvana Lithium Evanescence Lithium Pink We’ve Got Scurvy from the album Sponge Bob’s Greatest Hits The Steve Miller Band Fly Like an Eagle EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS BOOK: The Promise of Lithium: How an Over-the-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease Thanks to Curiouscast Dila Velazquez – Story Producer Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation’s Parkinson’s IQ + You Events PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023
S5 E10 · Tue, January 31, 2023
Muhammad Ali’s Parkinson’s Journey w/ May May Ali and Michael S. Okun, MD
January 17 marks the 81st anniversary of the birth of one of the greatest Parkinson’s advocates of all time, Muhammad Ali. In this episode, we learn more about the champ’s journey from his eldest daughter Maryum “May May” Ali – the stigma her father dealt with after his diagnosis, when she first noticed changes in her dad, struggles with speaking and medication, and how he improved his quality of life. In addition to exploring Ali’s Parkinson’s legacy, Dr. Michael S. Okun, the head of neurology for the University of Florida Norman Fixel Institute for Neurological Diseases, sheds light on Ali’s PD diagnosis. Okun and two other neurologists, the final three neurologists to treat Ali over the course of many years, published an article in October 2022 to clear up misinformation about his diagnosis. Ali was a young onset Parkinson’s disease patient that responds to Levodopa which is different if his Parkinson’s onset due to his boxing career and punches to the head. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS Maryum “May May” Ali - website RESOURCES Muhammad Ali and Young-Onset Idiopathic Parkinson Disease—The Missing Evidence Thanks to Curiouscast Dila Velazquez – Story Producer Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation’s Parkinson’s IQ + You Events PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. <a href="https:
S5 E9 · Wed, November 23, 2022
I Don’t Care Just Call It Apathy
One of the dark symptoms of Parkinson’s is apathy. Describing apathy is a bit like describing what it feels like when a dementor in the Harry Potter books kisses a character – the ability to drain happiness and hope from its victims. When a person with Parkinson’s spirals into a an apathetic state they lack motivation and lose interest in activities they used to enjoy. To experience apathy is like being in a bubble of indifference. You stop caring about yourself or other people in your life with a total void of emotion. In this episode we hear firsthand from Jeff and Kristin Krantz what it’s like as a person with Parkinson’s living in a apathetic state and how it impacts the care partner and others in the family. Dr. Bradley McDaniel offers advice on how to escape apathy through pursuit of your meaning in life. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS Dr. Bradley McDaniels https://hps.unt.edu/bradley-mcdaniels-phd-crc Resources Mentioned Ending Parkinson’s Disease book by Ray Dorsey MD, Michael Okun MD, Todd Sherer PhD and Bas Bloem MD, PhD Man's Search for Meaning by Victor Frankl The Spirituality of Imperfection Storytelling and the Search for Meaning by Ernest Kurtz and Katherine Ketchum Jeff & Kristen Krantz Thanks to Curiouscast Dila Velazquez – Story Producer Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotion
S5 E8 · Wed, November 02, 2022
Live Inspired with John O'Leary
When John O’Leary was a nine-year-old boy, he was burned on 100% of his body. He was in his garage playing with matches and gasoline—just like he’d had seen the older boys on his block do. A fire exploded, consuming the garage, sending him flying back against the wall and turning his whole world upside down. He talks with Larry & Rebecca about how he was given 1% chance to live. Now, 36-years later, John is living an inspired life. He has two national best-selling books “On Fire” and “In Awe.” he’s a podcast host, an in-demand international speaker and is someone who intimately understands the impact that Parkinson’s can have on a family. Email Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS John O’Leary Website www.JohnOLearyInspires.com Live Inspired Podcast https://johnolearyinspires.com/podcast/ · Episode featuring Larry & Rebecca Gifford and When Life Gives You Parkinson’s Books · On Fire : The 7 Choices to Ignite a Radically Inspired Life · In Awe : Rediscover our childlike wonder + unleash inspiration, meaning and joy. Facebook @JohnOLearyRisingAbove Instagram @joholeary.inspires Linked In @John-O-Leary-08b2805 Twitter @JOLearyInspires Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners </strong
S3 E7 · Wed, October 19, 2022
Being Well with Parkinson’s
Kat Hill and Nancy Peate are the authors of Being Well with a Chronic Illness: A Guide to Joy and Resilience with Your Diagnosis. In their book they offer wisdom, language, research-supported guidance and personal stories to help people with Parkinson’s and other chronic conditions navigate their wellness journey. In this episode, Rebecca talks with the authors — who also happen to be good friends — about their own experiences with Parkinson’s and how they have cultivated tools to find joy and resilience. Larry and Rebecca also discuss and offer their reactions to the book. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS Being Well with Chronic Illness: A Guide to Joy & Resilience with Your Diagnosis by Kat Kill and Nancy Peate (Paperback and e-Book) Penguin Random House United States US$18.00 Canada C$23.00 Australia A$32.99 WHSmith (UK) United Kingdom £15.63 PD Lemonade – Kat Hill’s podcast VIDEO: Advocacy Pyramid ARTICLE: Tom Isaac’s Advocacy Pyramid explained from Grand Challenges 2014 Women’s Parkinson’s Project Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada . Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message <a href="https://twitter.com/Parki
S5 E6 · Wed, October 12, 2022
What’s Your Superpower? Feat. Geoff Constable
Geoff Constable is a PD Avenger and an Ambassador for the World Parkinson Congress 2023 in Barcelona. We met at the last WPC2019 in Kyoto. Like many of us with YOPD, Geoff’s diagnosis was delayed six years as doctors tried to figure out root issue of his symptoms. In 2008, at the age of 50, he finally was able to put a name to the issues he had, Parkinson’s disease. Geoff spent his teen years sleeping on friends couches and sometimes living on the street. He earned a degree in Naval Architecture and designed 16 Ships for the Royal Australian Navy and spent countless hours battle testing the ships in extreme conditions. At 44-years old he talked to his doctor about onsetting symptoms. It took six years to diagnose him with Young Onset Parkinson’s. He was happy to have a name for it, but bummed because there was no cause, no cure, and no standard disease path. Listen to how Geoff took his diagnosis of Parkinson’s and discovered his own superpowers on how to incorporate and accept it. Using his own body as vessel, he put himself through battle testing and discovered he was capable of far more than he or his doctors believed possible. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS WPC2023 Registration and Hotel Geoff Constable’s blog VIDEO: Geoff Constable’s 2022 Moomba performance Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. <a href="http://w
S5 E5 · Thu, September 22, 2022
What’s New and Now in Parkinson’s
Updates on several stories we’ve shared on the podcast. Reactions to the three-minute test to diagnose Parkinson’s. The final 30km on a cross-country bike tour for Parkinson’s leaves bikers spinning their wheels. * We catch up with the Rigid Riders. Plus, Ozzy Osbourne on stage for the first time since his Parkinson’s diagnosis. *Don’t forget to push the donut button. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS Spinning Wheels - www.spinningwheelstour.ca Spinning Wheels – YouTube: https://www.youtube.com/channel/UCR1_sRarZ_nt6neUqAXNMPw Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design University of Manchester Jim Redmond Steve Iseman Mike Loghrin Darlene Richards-Loghrin BBC Sport “The Talk” on Talk TV Network And YOU! Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. Learn more about your ad choices. Visit <a href="ht
S5 E4 · Wed, September 07, 2022
A 3-minute test for a Parkinson’s diagnosis
This is a breakthrough, breaking news episode featuring Professor Perdita Barran, University of Manchester and Joy Milne, the woman who can smell Parkinson’s. Today. their latest research paper was published at 12:01am (BST) September 7, 2022. This research has led to a three-minute non-invasive test to determine a positive or negative Parkinson’s diagnosis. Clinical Research will begin within two years at University of Manchester and has the potential to be approved as a diagnostic tool for neurologists before the end of the decade. LISTEN TO JOY MILNE in previous episodes June 05, 2019 The Woman Who Can Smell Parkinson’s | World Parkinson Congress | Kyoto October 20, 2019 The Smell of Parkinson’s EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023
S5 E3 · Wed, August 24, 2022
I Was Clueless About Caregiving
Dave Iverson was diagnosed with Parkinson’s in 2004. He is a founding member of The Michael J Fox Foundation (MJFF) Patient Council and was the first host of the MJFF Parkinson’s Podcast. We caught up at a patient council meeting in New York City to chat about his new book “Winter Stars.” Parkinson’s runs deep in Dave’s family, but this book is not strictly about Parkinson’s. It’s about family, life choices and a bone between a mother and son. At the age of 59, having spent nearly forty years in public broadcasting, Dave paused his career. His 95-year old mother had a rough bout with pneumonia and couldn’t care for herself anymore. So, he paused his career, moved in with her and became her caregiving. That decision resulted in a decade of self-discovery, an odyssey that forced Dave to come face to face with his personal weaknesses and uncharacteristic anger, while strengthening the bond to his mother and learning to live with, learn from and love dementia. Winter Stars by Dave Iverson is available wherever you buy your books. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS “Winter Stars” by Dave Iverson – Sample Chapters, Listen to an Excerpt, Read Reviews, and Purchase My Father, My Brother and Me – Watch Dave Iverson’s FRONTLINE documentary online. Capturing Grace – Homepage for Dave Iverson’s film about Parkinson’s and Dance. Care Partner Resources PARKINSON CANADA Care Partnering Home Page – Access the free care partner book, self-assessment guide, care partner burden calculator, home safety evaluation, activities of daily living, daily needs and routine tracker, Parkinson’s disease daily diary, and a “What-if” planning tool. MICHAEL J FOX FOUNDATION Care Partner Guide – “You, Your Loved One and Parkinson’s Disease” FREE DOWNLOAD from The Michael J Fox Foundation Caregiving and Parkinson’s “Ask the MD” –
S5 E2 · Wed, August 10, 2022
Two women with Parkinson’s, 200 years apart
SUMMARY : In the book, “Mary & Me,” author Robyn Cotton draws upon her own experiences with Parkinson’s in a fictional novel based in contemporary times and early 1800’s London, England when Dr. James Parkinson was roaming the streets and noticing a condition, he called shaky palsy. Not often does Parkinson’s play such a key role in a fictional piece of work, Robyn’s journey grounds the book in near-real experiences as she and her characters struggle with the degenerative brain disease. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS “Mary & Me” by Robyn Cotton – Buy it on Amazon The BC Brain Wellness Program Tightrope Theatre – “Playing with Words” workshops and the more intense “Express Yourself” six-week course with Rebecca Gifford are open for registration. Thanks to Dila Velazquez – Story Producer Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disea
S5 E1 · Wed, July 20, 2022
Spinning Wheels
Larry & Rebecca Gifford highlight two Canadians with Parkinson’s who are sparking awareness, raising money and building community by riding their bicycles across every Canadian Province over the next three months. Jim Redmond and Steve Iseman take a break from pedaling to sit down with Larry at picnic table outside their RV on Day two of the journey when they stopped at the Capilano River RV Park in West Vancouver. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Jim Redmond - LISTEN to Jim’s episodes from Season One Parkinson’s Doesn’t Have to Be a Career Killer. Hope, Fear, Frustration and Levadopa Steve Iseman Mike Loghrin Darlene Richards-Loghrin WANDA (The RV) Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. PD Avengers – We are building a global alliance to end Parkinson’s. Join us . World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design<
S4 E7 · Fri, April 08, 2022
Down Under | A Spark, A Warrior, and World Parkinson's Day
This is part one of three of a mini-series of episodes we are calling “Down Under.” Host Larry Gifford gets you ready for World Parkinson’s Day. Learn about the new international symbol for Parkinson’s disease named “THE SPARK” and how you can use it. Where to watch the world premiere of the new documentary “The Long Road to Hope: Ending Parkinson’s Disease.” The Parkinson Unity Walk in Central Park in New York City is going to take place April 23. IF you can’t make it, you can still participate, we’ll tell you how. The featured guest is Founder of PD Warrior and the Insight into Parkinson’s virtual conference Melissa McConaghy, FACP. Melissa takes us behind the curtains of PD Warrior and gets us ready for Insight into Parkinson’s Conference. We discuss stigma, self care, and neuro plasticity. Thank you for listening. EMAIL US: ParkinsonsPod@CuriousCast.ca Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS FOR THIS EPISODE Documentary: The Long Road to Hope | Ending Parkinson’s Disease The Spark www.WorldParkinsonsDay.com PD Warrior www.PDWarrior.com Insight into Parkinson’s www.PDWarrior.com/insight-into-PD Unity Walk – www.unitywalk.com Mediflix – www.mediflix.com Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. <a href="http://w
S4 E6 · Wed, February 16, 2022
The Talk | Larry & Rebecca in Conversation – Part Three of Three
This is the final instalment of our three episode mini-series we are calling “The Talk.” Hosts Larry and Rebecca Gifford talk about how Parkinson’s can send them into a hopeless spiral – at times it feeling as if they aren’t both committed to the marriage. And then there are times when Parkinson’s brings them closer together than ever. A difficult, intimate, deeply personal conversation about keeping connected and the importance of communication for people with Parkinson’s and care partners. This episode is dedicated to our dog Nina. We mention her a couple times in here. After this recording, her health turned and she’s no longer of this earth, but is someone where she can run free, where bully sticks are unlimited and she is free of pain. Thank you for listening. EMAIL US: ParkinsonsPod@CuriousCast.ca Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford. The latest podcast, released on February 16th, 2022 features Larry & Rebecca and Kat & Ken Hill about intimacy and Parkinson’s. Happy Valentine’s Day. PD Avengers – We are building a global alliance to end Parkinson’s. Sign up today and check out the events calendar at www.PDAvengers.com World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for July 2023… It’ll be here before you know it. Spotlight YOPD – The only Parkinson’s organization
S4 E5 · Wed, February 02, 2022
Ep 5 – The Talk | Larry & Rebecca in Conversation – Part Two of Three.
This is part two of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. In this episode, they check share the emotional toll Parkinson’s takes on each of them. How to maintain agency of your life while dealing with Parkinson’s, how apathy impacts everything and where hope is found when you feel hopeless. Thank you for listening. EMAIL US: ParkinsonsPod@CuriousCast.ca Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. Also noted in the 34 page booklet was… PD Avengers – We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us . Details under “meetings” at PD Avengers dot com. World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for t he sixth triennial congress. Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. Learn more about your ad choices. Visit megaphone.fm/adchoices
S4 E4 · Wed, January 19, 2022
The Talk | Larry & Rebecca in Conversation – Part One of Three.
This is part one of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. They will check on how each other is doing physically and emotionally. They will talk about personal priorities, advocacy, and how chronic disease changes and challenges the dynamics of a family. We will also get into what gives us hope. In part one, that you are about to hear – we are talking about where our life sits from a practical perspective, the joys and pressures. Also, what we are discovering about what we need as people and a family to maintain balance and productivity in our relatively new life where Parkinson’s is a main character. We are figuring out how to take true breaks, a concept and practice that changes its meaning constantly and looks different as Parkinson’s progresses. And we’re relearning how energy conservation and awareness affects our wellbeing and ability to be present and as healthy as possible. Thank you for listening. EMAIL US: ParkinsonsPod@CuriousCast.ca Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design This episode is dedicated in memory of my friend and fellow improve performer Sukhi. Thanks for the laughs pal. Godspeed. Our Promotional Partners include: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. Also noted in the 34 page booklet was… PD Avengers – We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us . D
S4 E3 · Wed, December 22, 2021
Deep Dive into DBS | Part Two of Two: Shake it Off
Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We learn about the innovative technology used for DBS from Dr. Alfonso Fasano, the chair of Neuromodulation and multi-disciplinary care at the University of Toronto and University Health Network. Sonia Soriano-Espert from Valencia, Spain, through translator and friend Sabela Avion, shares her experience of having DBS surgery conducted by a robot. This interview first aired on ODNA PK radio in Spain. The hosts are PD Avengers and members of Con P de Parkinson, a growing group of women who speak Spanish and have PD. In part-one of this two-part arc, Heather Kennedy and Becca Miller were preparing for DBS Surgery. In part two, both women share their surgery experience. The share how their children responded and how they feel about DBS, now that they have had it. Thank you for listening. Send us songs you would want to listen to while undergoing DBS. EMAIL US: ParkinsonsPod@CuriousCast.ca Or add the songs you’d want to listen to during DBS to the WLGYP DBS PLAYLIST on Spotify Have questions for Larry & Rebecca? Do you want to share your DBS story or have an idea for an upcoming podcast? Want to share how the podcast has helped you? Click the link on your laptop or desktop and leave us a voice message. https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Alfonso Fasano , MD, PhD, Chair in Neuromodulation and Multi-Disciplinary Care, Neurologist, Co-Director of the Surgical Program, Movement Disorders Centre, Toronto Western Hospital. Heather Kennedy , PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo Becca Miller, PhD , PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University. Michael S. Okun, MD University of Florida <a href="https://movementdisorders.ufhealth.org/about/faculty-fellows/kelly-d-foote-md/https:/movementdisorders.ufhealth.o
S4 E2 · Wed, December 08, 2021
The DBS Journey | Part One of Two: Your Brain Controls Everything and We Can Control Your Brain
Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We challenge the Neuroscience perception that the brain is everything we know and do, and everything we are. We believe, more than just a brain that makes us human, empathetic, and real. This first part prepares you for the surgery. We call it DBS 101. We will explain terminology detail the lead up to the surgery, and tell you why it matters where the lead wires are placed in your brain. We explore our personal hesitations surrounding DBS. And we revisit friends of the podcast, Heather Kennedy and Becca Miller, both of whom are recovering from recent DBS surgeries. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo Becca Miller, PhD , PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University. Michael S. Okun, MD University of Florida Kelly D. Foote, MD University of Florida Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012) Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford <a href="https://spotli
S4 E1 · Wed, November 24, 2021
The brain under seige
The first three episodes of Season 4 of When Life Gives You Parkinson’s go deep inside the brain. It has been five years since the United Nations recognized one BILLION people or one in six person’s alive today on the planet suffers from a neurological disorder, from Alzheimer and Parkinson disease, strokes, multiple sclerosis, and epilepsy to migraine, brain injuries and neuro-infections. Each year, nearly 7 million dying from neurological issues each year. Every two-and-half minutes, another person dies from Parkinson’s disease. What’s happening to us? The Brain is Under Siege. In the kickoff episode of Season 4, Howard Weiner MD, a Harvard professor and Co-Director of the Ann Romney Center at Brigham and Women’s hospital shares his theories. Weiner released a book in October 2021 called, “The Brain Under Siege; Solving the Mystery of Brain Disease, and How Scientists are Following the Clues to a Cure.” He suggests the key to solving this diseases is to treat them like crime scenes. Learn along with Larry as Dr. Weiner details Alpha Synuclean, Microbiome, the Brain Gut Connection, and the importance of volunteering for research. He also explains how many of these brain issues have more in common that we first thought. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Dr. Howard Weiner, Harvard professor, Co-Director of The Ann Romney Center at Brigham and Women’s Hospital and author of “The Brain Under Siege.” Dr. Ray Dorsey, co-author “Ending Parkinson’s Disease.” Dr. Gregory Petsko – Ted Talk Dr. Silke Cresswell – Studies role of Gut Biome Ted Talks Djavad Mowafaghian Centre for Brain Health Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. PD Avengers – We are building a global alliance to end Parkinson’s. Join us. World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.
S4 E1 · Wed, November 24, 2021
The Brain Under Siege
The first three episodes of Season 4 of When Life Gives You Parkinson’s go deep inside the brain. It has been five years since the United Nations recognized one BILLION people or one in six person’s alive today on the planet suffers from a neurological disorder, from Alzheimer and Parkinson disease, strokes, multiple sclerosis, and epilepsy to migraine, brain injuries and neuro-infections. Each year, nearly 7 million dying from neurological issues each year. Every two-and-half minutes, another person dies from Parkinson’s disease. What’s happening to us? The Brain is Under Siege. In the kickoff episode of Season 4, Howard Weiner MD, a Harvard professor and Co-Director of the Ann Romney Center at Brigham and Women’s hospital shares his theories. Weiner released a book in October 2021 called, “The Brain Under Siege; Solving the Mystery of Brain Disease, and How Scientists are Following the Clues to a Cure.” He suggests the key to solving this diseases is to treat them like crime scenes. Learn along with Larry as Dr. Weiner details Alpha Synuclean, Microbiome, the Brain Gut Connection, and the importance of volunteering for research. He also explains how many of these brain issues have more in common that we first thought. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Dr. Howard Weiner, Harvard professor, Co-Director of The Ann Romney Center at Brigham and Women’s Hospital and author of “ The Brain Under Siege. ” Dr. Ray Dorsey, co-author “ Ending Parkinson’s Disease. ” Dr. Gregory Petsko – Ted Talk Dr. Silke Cresswell – Studies role of Gut Biome Ted Talks Djavad Mowafaghian Centre for Brain Health Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message <a href="https://twitter.com/Pa
Wed, June 16, 2021
DELAYED: This pod and the WPC
We missed a few weeks of the podcast and I wanted to explain why. Turns out I can’t still do it all. I’m having to prioritize more and more on where I put my focus. This time, the podcast got short shrift. But, I figured if anyone would be understanding it’ll be my pod peeps. There are two more episodes of Season 3 of When Life Gives You Parkinson’s which will be released sometime this Summer. One on Paraquat and other toxic chemicals and one on DBS: Deep Brain Stimulation. After those episodes drop, Rebecca and I will be on a hiatus from the podcast until sometime in 2022. Breaking News. Big Announcement dropped on June 15 that the World Parkinson Congress 2022 in Barcelona is postponed one year to July 4-7. It will still be in Barcelona. Learn more about your ad choices. Visit megaphone.fm/adchoices
S3 E19 · Wed, May 26, 2021
NBA star Brian Grant on hard work, team work, and Parkinson’s
This episode of When Life Gives You Parkinson’s features former NBA star Brian Grant who was diagnosed with Parkinson’s disease (PD) in 2008. He spent 12 years battling for rebounds and putting points on the board playing professional basketball and the last 13 years battling Parkinson’s and putting points on the board as a PD advocate. “You know, when I go onto court and go up against somebody who was a big name, I’d grit my teeth to try to be an animal out there,” Grant shared. But he admits, YOPD is a different beast than pro basketball, “You can do that at Parkinson's, but it's just going to sit there and say, keep gritting your teeth and when you get done gritting your teeth… I'm going to have your cheekbone.” From denial and depression to acupuncture and advocacy, Brian Grant’s PD story is a unique but relatable journey for many suffering and living with the disease. His honesty and vulnerability are on display as he, like many of us, try to come to terms with a disease determined to do whatever it pleases, whenever it wants to. You can find out more about the Brian Grant Foundation at BrianGrant.org . His book Rebound: Soaring in the NBA, Battling Parkinson’s, and Finding What Really Matters is available everywhere you buy books… Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds
S3 E18 · Wed, May 12, 2021
Care Partners Advocating for Themselves
This episode of When Life Gives You Parkinson’s is all about care partners and caregivers advocating for themselves. We take our jobs very seriously and often put caring for ourselves last on our lists. Our lives and well-beings are affected on nearly every level by our Person with Parkinson’s condition, and we have our own needs, yet we still are often considered predominantly in relationship to them. How do we as care partners, caregivers and Partners in Parkinson’s advocate for equal consideration in and out of our relationships? How do we make sure we have what we need to take care of ourselves, not to mention the time and space to do it? How do we learn to consistently consider our own well-being first? Rebecca takes the lead this episode and talks to three wise and wonderful care partners. First, she speaks frankly about the challenges and lessons that Cherryl Choi and Sheryl Hague have learned as they navigate their life as care partners, mothers and humans. Then she speaks to Leslie Davidson, an award-winning writer and Person with Parkinson’s who also was a care partner and caregiver to her late husband Lincoln, who had Lewy Body Dementia. She tells us what she’s learned by being on both sides of the experience and the role her writing plays in her own advocacy. And, of course, Rebecca and Larry talk about how they move through these waters in their relationship. U-Turn Parkinson’s is Sheryl and Tim Hague’s wellness center in Winnipeg. Find out more about all that Cherryl and Jimmy Choi do at a TheFoxNinja.com . Writer Leslie Davidson’s website . Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J.
S3 E17 · Wed, April 28, 2021
Parkinson’s is not witchcraft or a curse | Parkinson’s Si Buko Uganda
April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s addresses stigma of Parkinson is in Uganda. You will meet Hannington Kabugo and learn how the passion and resourcefulness of a single advocate can help drive change in the world. Hannington and his two sisters moved with their father out of their home after the village determined his Mom was a witch. They were never to return. He tells us the stories of what happened when he sneaked back to see her. Years later, Hannington realized she was exhibiting all the signs of Parkinson’s. He has established Parkinson’s Si Buko, which means Parkinson’s is not witchcraft or a curse. DONATIONS for Hannington and Parkinson's Si Buko can be handled two ways. 1. Donations go directly into a PayPal account owned by Sherryl Klingelhofer, President of Parkinson's Si Buko 2 " Uganda: Pills for Patients with Parkinson's , which will go direct to Hannington Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Kabugo Hannington – is the Director of Operations of Parkinson’s Si Buko Uganda Gavin Mogan – is a PwP, living in Texas, and is Executive Director of Parkinson’s Si Buko Uganda Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to
S3 E16 · Wed, April 21, 2021
Getting more wise about PD with Allan Cole
April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s Larry interviews Allan Cole from the PD Wise blog and the author of a new book Counseling Persons with Parkinson’s Disease . Allan, 53, received his diagnosis nearly five years ago. In addition to his advocacy work, he is a father of two teenaged girls, he is coming up on his 30th wedding anniversary and he is a professor and academic dean in Steve Hicks School of Social Work at the University of Texas at Austin. Halfway through this episode, the host becomes the guest as Allan interviews Larry. The discussions wind their way through work life with PD, family, advocacy, leadership and what gives them hope. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Allan Hugh Cole Blog: PD Wise , Book: Counseling Persons with Parkinson’s Disease Follow Allan on Twitter: @PDWise Allan mentioned an episode of When Life Gives You Parkinson’s when I spoke with colleagues. Here’s a link to “ Parkinson’s doesn’t have to be a career killer. ” Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford <a href="https://spotligh
S3 E15 · Wed, April 14, 2021
On the Edge of Disease-Altering Drugs and a Bio Marker
Learn more about your ad choices. Visit megaphone.fm/adchoices
S3 E14 · Wed, April 07, 2021
Women and Parkinson’s: Hormonal cycles and pregnancy for women with YOPD
April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s is about women with Parkinson’s who are diagnosed less often, less accurately and offered treatments that are less effective often because hormonal cycles play a role and it’s a rather unexplored area of the disease. We will hear from three women with Parkinson’s who also experienced pregnancy, giving birth and parenting with PD. All of their experiences were different, but certainly complicated by their Parkinson’s disease. And all three are now advocates for women like them. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Soania Mathur, MD - Sonia was a family physician and pregnant with her first child when she was diagnosed at 27. She is co-founder of PD Avengers , co-chair of The Michael J Fox Patient Council, on the Board of Directors for the Davis Phinney Foundation , and the medical boards of the Brian Grant Foundation and Parkinson Canada . She and her two daughters have also written two Children’s books on Parkinson’s; My Grandpa’s Shaky Hand and Shaky Hands – A Kids Guide to Parkinson’s Disease . Caitlin Nagy – After denying and hiding her diagnosis for seven years, Caitlin, a 38-year-old mother, is sharing her story of Parkinson’s in Parkinson Canada ’s April Awareness Campaign “ Together: No Matter What. ” Paola Celli - Paola was born in Ecuador and diagno
S3 E13 · Wed, March 24, 2021
Red Letter, Give a Dime
In this episode of When Life Gives You Parkinson’s, I am the host of a live event with four leading experts in the Parkinson’s world. Together they wrote a book called “Ending Parkinson’s Disease” and launched a red letter campaign to the White House. It’s been one year since the book was released and it has helped to inspired the movement PD Avengers, which I co-founded. What’s new in Parkinson’s? What have they learned? What’s standing in our way of success? Listen as Dr. Ray Dorsey, Dr. Bas Bloem, Dr. Michael Okun, and Dr. Todd Sherer sit down for one on one interviews with me and learn how, no matter where you are in the world, you can help make a difference. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Todd Sherer, CEO Michael J Fox Foundation Dr. Michael Okun, Chair and professor of Neurology, University of Florida Dr. Bas Bloem, Prof. Bas Bloem is the medical director of the Department of Neurology at Radboud University Medical Center. Dr. Ray Dorsey, Prof. Department of Neurology , Director of Center for Health and Technology (SMD) at the University of Rochester Buy the Ending Parkinson’s Book or Join the Red Letter Campaign www.endingpd.org Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to the Parkinson’s Canada Preventing Falls Guide . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’
S3 E12 · Wed, March 10, 2021
Expanding Your Healing Tools: Integrative Medicine Part 2
This episode of When Life Gives You Parkinson’s is about exploring Eastern holistic healing modalities as a complement to the pharmaceuticals relied upon by Western Medicine. Parkinson’s touches a global community, so we might as well use all the global tools to address our health and wellness. Sometimes it is a matter of having the courage to try something new. For me, last year, that was acupuncture. I am afraid of needles, but quite enjoyed the pain relief it provide and calming, centering sensation it provided. Practitioners of traditional Eastern medicine stress the importance of finding an energetic balance and energetic awareness. I have never had Reiki. Rebecca experienced it at World Parkinson Congress in Kyoto. We talk to the two Reiki masters who were in the “renewal room” and the impact that they observed Reiki had on people with Parkinson’s and care partners. We also chat with Karl and Angela Robb. Karl has had PD for thirty years. After discovering the benefits of Reiki, they both became Reiki masters and use it to manage life’s challenges. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Muniqui Muhammad and Lena Takahashi www.healinglandreiki.com Karl and Angela Robb www.KarlRobb.com and check out their book A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease Book Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada . Here is a link to the Parkinson’s Canada Preventing Falls Guide . Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford <a href="https://sp
S3 E11 · Wed, February 24, 2021
All about falling: the down side of PD
Hi, it’s Larry. I’m 49 and I have Parkinson’s disease. This episode of When Life Gives You Parkinson’s is about managing falls. It is winter and where we live snow and ice and black ice and freezing rain are all hazards, which increase everyone’s chances of falling. People with Parkinson’s are more prone to slipping and stumbling, skidding and tumbling to the ground. So, we should talk about it. I didn’t consider it a topic I’d need to know much about until I get much older. I was wrong. One reason we're doing this episode is because over the holidays I had four falls. I am on the mend with help from NeuroFit BC’s Naomi Casiro. Rebecca and I talk with Physiotherapist Nicole Ascera, PhD. She’s a clinical specialist in neurosciences and wrote the Parkinson Canada Guide on Preventing Falls . I also meet the creator of the ACTIVATOR Poles by Urban Poling , Mandy Shintani. These are great tools especially for gait, balance and confidence issues. Through the episode, Rebecca and I realize we have a lot to do to prepare mentally, physically, emotionally and spiritually for the next fall. And the fall after that one. And the one after that one. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Naomi Casiro (Founder/ Registered Physiotherapist) BSc. (Kin), MPT, Certified PWR! https://www.neurofitbc.com/ Nicole Acerra, PhD Nicole Acerra, PhD, is a physiotherapist with a passion for neurological and vestibular rehabilitation. She is one of the authors of the Parkinson Canada’s Preventing Falls Guide Mandy Shintani OT & Gerontologist, Developer ACTIVATOR Poles & Founder Urban Poling Inc. Learn more about how Activator poles work with PwP at an upcoming free webinar. Register today! The webinar is on Wed April 28 at 7 pm EST/4 pm PST https://us02web.zoom.us/webinar/register/WN_QDm5AfunTZyUmW2yCccU5A <st
S3 E10 · Wed, February 03, 2021
Empowerment through the integrative medicine approach
In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I discover and discuss integrative medicine with Dr. Indu Subramanian. Integrative medicine is where Western and Eastern medicines meet. Activities we all are aware of like yoga, mindfulness, acupuncture and massage are among the activities that fall into integrative medicine. I first met Indu when she interviewed me on a webinar for PMD Alliance in September 2020. Indu is Canadian, having been born and raised in Ontario, she now lives in LA. She runs the Center of Excellence for Parkinson’s at the West Los Angeles Veteran’s Hospital and is a neurologist on staff at UCLA hospital. She’s also certified in Integrated Medicine , has more than 200 hours of yoga training and loves to explore unconventional and non-pharma treatments to improve life for people with PD. Her study on loneliness during the pandemic causing an increase of PD symptoms was widely reported on in medical journals, newspapers and popular magazines alike. She is approachable, positive, curious, and empowering. We talk about her love of the brain, the PD Avengers, the power of storytelling, and why integrative medicine does come with some warning labels. We hope you will enjoy this conversation as much as we do. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Indu Subramanian, Movement Neurologist over seeing Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and a neurologist at UCLA Hospital. Follow her on twitter at @ drisubramanian Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by L
S3 E9 · Wed, January 20, 2021
Advocacy, collaboration and Parkinson’s in 2021 – featuring Dr. Karen Lee and Eli Pollard
In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I are talking with two leaders of Parkinson's organizations about the impact coronavirus has had on advocacy, collaboration, new programs. Karen Lee and Elizabeth “Eli” Pollard are true leaders with serious minds and senses of humor, and both are visionary when it comes to bringing the Parkinson community together with a purpose. Dr. Karen Lee took on the role of President and CEO of Parkinson’s Canada in the middle of the Coronavirus pandemic. She’s taking the work-at-home mandate as a chance to meet and get to know her staff, advocates, and leaders of other organizations virtually, “We talk with all the various groups, look for opportunities, synergies, it's not about trying to compete and were not looking to duplicate efforts, but really looking for efficiencies and opportunities.” Parkinson Canada is also establishing a Parkinson Advisory Council to help inform decisions and make recommendations to the charity. Eli Pollard, Executive Director of World Parkinson Coalition, would typically make 12 to 15 trips to various destinations as she plans for the World Parkinson Congress 2022 in Barcelona. With travel restricted by COVID-19, she has been busy creating new programs including a dual language webinar series where the same presenters host a webinar first in English and then thirty minutes later in Spanish. She’s also just announced that May 17-21, 2021 is the inaugural VIRTUAL World Parkinson Congress, “We've been chewing on this idea for a long time and COVID sort of pushed our hand, which is great. So it would be sort of “year one” is the in-person Congress, “year two” and “year three” would be a virtual Congress. And so we're calling it WPC Virtual.” This year’s theme is advancing science care and living with Parkinson's. Their will be around 80 presenter's, with 5 tracks, but all the content for each day will be release at once for virtual attendees to watch it at their convenience. There will be live Q&A sessions 24 hours after each scheduled session. The WPC Virtual admission is $25.00, all inclusive. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Karen Lee – President and CEO of Parkinson Canada @Dr_KarenLee <stron
S3 E8 · Wed, January 06, 2021
17 Things That Give Me Hope About Parkinson’s
In this episode of When Life Gives You Parkinson’s, Larry and Rebecca Gifford welcome 2021 by digging through a sack full of hope. Each week there seems to be another headline that signals major breakthroughs – as in bio-markers and disease altering treatments – are just around the corner for Parkinson’s. We talk to two people who confirm we are on the precipice of major changes in how we view and treat the disease. However, it is not just about the diagnosis and treatments. PD advocates come in all shapes and sizes – from 80 year old driveway walkers, to middle aged soccer players, to geeks and nerds sitting behind a computer screen. Each are unleashing their super powers on the PD community and owning it. Get ready for lasers in your head, a race with the moon and the inaugural Parkython. Plus, there’s a tomato… a laser… a magic ring… Uma Thurman….Barcelona, and a serious discussion of wearables for non-invasive measuring of dopamine levels. If you are a half-glass empty person, this episode will either be so packed with hope is shooting out your ears or you will have 17 more great, positive, groundbreaking, even life changing, “wow” moment things to find flaw with. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: David Vocadlo, Canada Research Chair in Chemical Biology, Simon Fraser University. His research website is here . Debi Brooks, Co-Founder and Executive Vice Chairman of the Michael J. Fox Foundation. Listen to Episode One of the podcast series “ Milestones and Momentum in Parkinson’s Research ” Charlie Appleyard – Learn about Sport Parkinsons here. The “Race the Moon” announcement will be on Monday, January 11, 2021. Rui Cuoto – Read about Parkython (Parkinsons + Hackathon) and register to be a part of it! Kevin Krejci – Learn more about the Oura Ring we discussed. John Dean – For details on the EPDA’s Keep on Moving and ExerciseCast click the links. Ralph & Berys Richardson – Check out <a href="https:
S3 E7 · Wed, December 16, 2020
Keep Walking. Keep Laughing
In this episode of When Life Gives You Parkinson’s, you will meet Ralph and Berys Richardson who have been married 52 years. Five years ago, doctors diagnosed Ralph with Lewy Body Dementia and then Parkinson’s disease a few years later. When COVID-19 hit, Ralph’s usual exercise programs were cancelled. So, with the help of Berys and his caretaker Greg Hicks, he decided to walk up and down his driveway everyday. He set his mind to doing 30 laps. He reach his goal in 17 days. Then he set his sights a bit higher, walk 100 days to raise $10,000. More than 200 days later, he’s still walking and he’s raised more than $30,000 for Parkinson Canada. Also, this episode is the final episode for contributor Niki Reitmayer. We say farewell and good luck. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod A fond farewell to Co-host and Producer Niki Reitmeyer. We love you, will miss you and wish all the best. Thanks for going on this journey with us. Thank you to the following people featured in this episode: Ralph & Berys Richardson – Check out Team Ralph on the SuperWalk website Greg Hicks – Greg documents Ralph’s campaign on Facebook Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/ , call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You – A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. PD Avengers - We want to help end Parkinson’s disease. Join us . World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design
S3 E6 · Wed, December 02, 2020
When dopamine agonists lead to agony
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
S3 E5 · Wed, November 18, 2020
Even Patients Can Push Things Along
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
S3 E4 · Wed, November 04, 2020
The Doctor - Patient Partnership
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
S3 E3 · Wed, October 21, 2020
Preventing Parkinsons Disease
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
S3 E2 · Wed, October 07, 2020
When You Know It’s Time to Fire Your Neurologist
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 <a hr
S3 E1 · Wed, September 23, 2020
Back to the beginning
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. <a href="https://www.pdavengers.com/ge
S2 E30 · Wed, June 24, 2020
Not just “care givers”, we are Partners in Parkinson’s
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 I
S2 E29 · Wed, June 10, 2020
ESPN Founder Bill Rasmussen
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
S2 E28 · Wed, May 27, 2020
Health and Technology
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
S2 E27 · Wed, May 13, 2020
Parkinson’s, Parenting, and the Coronavirus Pandemic
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 Parki
S2 E26 · Wed, April 29, 2020
From Rock Bottom to American Ninja Warrior
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:
S2 E25 · Wed, April 22, 2020
The Never-ending Hunt For a Parkinson's Cure
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 th
S2 E24 · Wed, April 15, 2020
Escaping the darkness of depression with Heather Kennedy
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_Reitma
S2 E23 · Wed, April 08, 2020
A conversation with Dave Clark on Parkinson’s, broadcasting, and life
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: <a hr
S2 E22 · Wed, April 01, 2020
Ending Parkinsons
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
S2 E21 · Wed, March 18, 2020
This might be the closest thing to a cure for Parkinson’s
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: <a href="https://www.speakpipe.com/WhenLifeGivesYouParkin
S2 E20 · Wed, March 04, 2020
Stem Cells, Parkinson's and Bad Batch
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 Parkin
S2 E19 · Wed, February 19, 2020
How Writing Can Help People With Parkinson’s
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: <a href="https://www.instagram.com/parkinson
S2 E18 · Wed, February 05, 2020
How did I get Parkinson’s?
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
S2 E17 · Wed, January 22, 2020
Shake With Me: One Family’s PD Journey
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 he
S2 E16 · Wed, January 08, 2020
Misdiagnosis
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 co
S2 E15 · Wed, December 18, 2019
The Parkinson’s Legacy of Muhammad Ali
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; <a href="https://www.speakpipe.com/WhenLif
Fri, December 06, 2019
A health update from Larry
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 stil
S2 E14 · Wed, December 04, 2019
They Say Laughter is the Best Medicine
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 Sports Improv 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 project at 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 Parkinso
S2 E13 · Wed, November 27, 2019
Parkinson’s is a family affair | 7
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 conv
Bonus · Wed, November 20, 2019
Extra Dosage | Robin Williams
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 h
S2 E11 · Wed, November 13, 2019
Parkinson’s is an Extreme Challenge | 6
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 cheeri
Bonus · Wed, November 06, 2019
Extra Dosage | Jillian’s Gym
This is a special bonus episode of the When Life Gives You Parkinson ’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. In this episode of When Life Gives You Parkinson’s I visit Jillian Carson, 59, at her new Parkinson’s Wellness Centre in Victoria, British Columbia. It’s a dream that I thought would never happen.” Carson, a retired physiotherapist and nine-years into her Parkinson’s diagnosis, knows how important the centre is for people, “Everyone deserves to have the care they need. I see it now. I watch them come from their classes. They are smiling, sweating and there is lots of laughter. It’s beautiful.” The door into the centre reads “Jillian’s Gym” and there is no doubt she is the queen bee of this hive of activity. The centre is buzzing with people: coaches, volunteers and dozens of people with Parkinson’s. They take turns with heavy bags, speed bags, and other boxing equipment, stepping through giant tires, riding exercise bikes, stretching, jumping and running. While there, Jillian challenged me to a “yellie” competition. We both got down on all fours and counted by two as loud as we could. Our voices propelled a small toy forward and we followed behind racing against each other to see who’s “yellie” would cross the finish line first. That exercise worked on our cognitive skills, vocal expression and physical ability. And we laughed and laughed and laughed. Jillian preaches the importance of having a lot of support for your PD journey, “With Parkinson’s you need a life raft. Not one person, but at least eight. Because, if one of them is not available you need someone else. Your life raft needs to be full.” The centre, which opened in September 2019, is a life raft for an entire community of people with Parkinson’s and it’s staying afloat thanks in a large part to a $500,000 anonymous donation. Visitors to the centre do not have to pay to take part. Donations, however, are accepted. Jillian is hopeful Parkinson’s Wellness Project becomes as much of a place of support as it is for exercise. She remembers the dark days in her own life after her diagnosis just three weeks before her 50th birthday. “It was hard. I was in denial for those years. What really changed it was really meeting everyone else at World Parkinson Congress. You look around see all these people living well with Parkinson’s, they’re laughing and I thought, I can do that too.” Despite the progression of Parkinson’s, which has affected her ability to cook and is causing more falls, she is full of energy and positivity. The secret is she benefits from seeing so many people benefit from the centre as they do using it. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; <a href="https://www.speakpipe
S2 E9 · Wed, October 30, 2019
Deep Brain Stimulation, is it worth it? | 5
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: <a href="http
Bonus · Wed, October 23, 2019
Extra Dosage 4: A visit with my neurologist
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: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to… Dr. Jonathon Squires,
S2 E7 · Wed, October 16, 2019
The Smell of Parkinson's | 4
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 vo
Bonus · Wed, October 09, 2019
Extra Dosage | Empowering People with Parkinson’s
This is a special bonus episode of the When Life Gives You Parkinson ’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. At the first in a series of events called “Parkinson’s IQ + You” presented by The Michael J. Fox Foundation, hundreds of people gathered in Atlanta to learn how to take control of their health care, build their care team and advocate for themselves. Additionally, leading scientists, researchers and neurologists shared the latest information on exciting research being conducted for Parkinson’s disease. Dr. Malu Tansey , professor of Neuro science and neurology at the University of Florida, helped to explain the role stress plays in Parkinson’s. “Stress is a bad player. Stress tends to immunosuppress you. Stress tends to create a situation in your body where all the normal pathways in your body are basically slowing down and they become sluggish. We think even removal of alpha-synuclein and other toxic species from your brain is critical, and stress really dampens those down.” Dr. David Standaert, chair of neurology at university of Alabama at Birmingham, is excited about all the research going into stopping Parkinson’s in its tracks. “Most of my patients, and I’ve asked them this question, ‘If I could tell you that I can’t fix your problems, but they won’t get any worse would you by happy?’ and they’d all be happy with that.” Staneard says there are a number of different ideas out there including treatments around synuclein. There are a couple of big clinical trials using antibodies to remove alpha synuclein from the brain. He’s not certain whether it will work or not, but we are going to find out because those trials are underway. If you live in the United States, The Michael J. Fox Foundation’s “ Parkinson’s IQ + You” , I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here. Saturday, December 14, 2019, Anaheim, California. Saturday, January 11, 2019, Phoenix, Arizona. Other sites recently announced include South Florida, Chicago, Oakland, and Houston. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Ins
S2 E5 · Wed, October 02, 2019
The Elephant in the Bedroom | 3
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 Fo
Bonus · Wed, September 25, 2019
Extra Dosage | Parkinson Superwalk
After my diagnosis with Parkinson’s disease, my first call was to the Parkinson Society of British Columbia. They were quick to offer information on support groups and mailed a packet of brochures, handouts and relevant information that immediately made me feel less anxious and more informed. That is why each year my family raises money and walks in the Parkinson SuperWalk in Vancouver. This year we had a team of 12 walkers on our “When Life Gives You Parkinson’s” team and my 10-year-old son Henry went door to door in our neighbourhood to help raise funds. His efforts contributed $160 to our team. In 1990, a small group of volunteers in Toronto decided to walk up Yonge Street to raise awareness for Parkinson’s disease and they called it “SuperWalk” due to the long distance. This year, Parkinson Canada held more than 82 SuperWalks across Canada with 10,000 participants and exceeded its goal of raising more than $2.4 million. While that seems like a great amount of funding, Jon Collins, Associate Director of Events and Partnerships for Parkinson Canada says, “The reality is, with 25 Canadians diagnosed every day, with our population aging, and (the number of people with) Parkinson’s expected to double by 2031, we are anticipating growing needs.” Organizations like Parkinson Canada are privately funding, there are no government dollars, and they rely on individual donations to maintain their programs and advocacy. Parkinson’s IQ + You I want to thank the great people in Atlanta for their hospitality as the Michael J. Fox Foundation’s “ Parkinson’s IQ + You” blew through town earlier this month. Each event will be highlighted in upcoming Extra Dosage episodes. If you live in the United States, I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here. Saturday, December 14, 2019, Anaheim, California. Saturday, January 11, 2019, Phoenix, Arizona. Other sites recently announced include South Florida, Chicago, Oakland, and Houston. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: F
S2 E3 · Wed, September 18, 2019
Slave to the Pill | 2
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
Bonus · Wed, September 11, 2019
Extra Dosage | Fundraising is a Family Affair
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 featuri
S2 E1 · Tue, September 03, 2019
Still Me, But Not The Same | 1
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 Reit
Trailer · Wed, August 21, 2019
Trailer - Season 2
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
Bonus · Wed, July 03, 2019
Extra Dosage: Dyskinesia
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, Connectic
Bonus · Fri, June 07, 2019
World Parkinson Congress Day 4 - WPC2019 | 14
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: @parkinsonspod irt 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
Bonus · Thu, June 06, 2019
World Parkinson Congress Day 3 - WPC2019 | 13
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
Bonus · Wed, June 05, 2019
World Parkinson Congress Day 2 - WPC2019 | 12
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: @parkinsonspod irt For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: <a href="https://www.youtube.com/user/worldpdc
Bonus · Tue, June 04, 2019
World Parkinson Congress Day 1 - WPC2019 | 11
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<
Bonus · Wed, May 29, 2019
It’s Parkinson Diseases with an “s” WPC2019 | 10
In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease. Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 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 diseases with 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 p
Bonus · Wed, May 15, 2019
Tips for Thriving with Young Onset Parkinson’s Disease - WPC2019 | 9
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 YouTube and 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 actua
Bonus · Wed, May 01, 2019
The Best Diet for People with Parkinson’s- WPC2019 | 8
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. 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
Bonus · Wed, April 24, 2019
Navigating Japanese Language and Culture - WPC2019 | 7
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. 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: @
Bonus · Wed, April 17, 2019
Let’s Talk About Sex and PD - WPC2019 | 6
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
S1 E26 · Thu, April 11, 2019
World Parkinson's Day
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
Bonus · Wed, April 10, 2019
Sharing stories and searching for sleep - WPC2019 | 5
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
Bonus · Fri, April 05, 2019
The Plight of Parkinson's on Super Awesome Science Show
Super Awesome Science Show (SASS) talks with Larry Gifford about his journey with Parkinson's and find out how he manages to cope both physically and emotionally. His story is both compelling and also inspiring and will reveal why his podcast has been designated at one of Apple Podcast’s best of 2018. In our SASS class, we’re going to explore the efforts to find answers to help those with Parkinson’s Disease. We speak with Rachel Dolhun, the Vice-President of Medical Communications with the Michael J. Fox Foundation. She reveals how the foundation is working to improve awareness and research into this disease. We also learn of her personal story as both a researcher in movement disorders and also as a communicator at the Foundation. She reveals that working to help those with Parkinson’s is truly a vocation. If you enjoy The Super Awesome Science Show, please take a minute to rate it on Apple Podcasts and be sure to tell a friend about the show. Thanks to you, we’ve been nominated for a Canadian Podcast Award as Outstanding Science and Medicine Series. Let’s keep the awesome momentum going together! Twitter: @JATetro Email: thegermguy@gmail.com Learn more about your ad choices. Visit megaphone.fm/adchoices
Bonus · Wed, April 03, 2019
Keep Calm and Research On - WPC2019 | 4
David Sangster is an Ambassador for World Parkinson Congress. On April 3, 2019 David is having Deep Brain Stimulation (DBS) surgery. It’s a treatment used for late-stage Parkinson’s disease that involves surgically implanting electrodes into the brain. The electrodes deliver small electric pulses which help reduce slow movement, tremor and stiffness. David was diagnosed in 2011 and lives with severe tremoring and twitching, dyskinesia, rigidity and more. He chatted with me on the podcast a couple weeks before surgery. I asked if he was nervous, “No. I just feel ready, I think. I know the risks. It’s worth it.” He’s documented his journey to DBS on his YouTube channel . His coming out party after the surgery will be attending the WPC2019 in Kyoto. There will be a lot of researchers at the congress too and for good reason according to Dr. Simon Stott, “There is never a good time to have Parkinson’s, but now is the most dynamic time for Parkinson’s research.” Stott is Deputy Director of Research at The Cure Parkinson's Trust in the UK and his website “ Science of Parkinson’s ” is plain English information about the research conducted on Parkinson’s. He’s been researching for the last 15 years, “When I first got into Parkinson’s research, there was one or two clinical trials that were looking at disease modification of Parkinson’s. That is slow, stop or reverse the condition. And now there is just dozens and dozens.” While he gets excited about the research, Stott is weary about expressing it too much, because he doesn’t want to raise people’s expectations. He explains that high expectations can impact research results by triggering a placebo effect and cause the group not getting the treatment to think the treatment is having beneficial effects. Additionally, Stott notes that 95% of everything that’s gone into clinical trials thus far have failed, so it’s prudent to approach whatever you’re testing with an assumption that it is going to fail. In this episode, James Heron teaches us the Japanese toast, “ Kanpai!” It’s really means “dry cup” and is the equivalent to “bottom’s up!” or “cheers!” You can hear the proper pronunciation if you google the phrase online. The Japanese often remove their shoes when entering a home or restaurant. Heron says when it is expected to remove your shoes, it will be apparent. When you do take your shoes off there is usually a set of slippers they’ll give you. Heron notes that in a traditional restaurant this will get you from the entrance to the tatami mats where you will remove your slippers before sitting down in your socked feet. Most of these restaurants will also have a second set of slippers for the washrooms. Be sure to remove the washroom slippers and put your restaurant slippers back on before returning to your tatami mat. <str
Bonus · Wed, March 27, 2019
Is Parkinson’s a genetic condition? WPC2019 | 3
One of the exciting areas of research as it pertains to understanding Parkinson’s disease is in genetics. Dr. Matt Farrer is a Geneticist at the Djavad Mowafaghian Centre for Brain Health. In 2004, he found the first genetic connection to Parkinson’s, LRRK2 , and his team has sincee identified about dozen others. Dr. Farrer is the first to admit Parkinson’s is not a genetic condition, but as with everything biological there is a genetic component, “The genetic component in Parkinson’s is 27%. That’s the variability in the condition that can be attributed to a genetic cause.” He explains that most people don’t have a clear cut passing of inheritance down the family line from their parents to them, for example. It does happen sometimes, but those families are pretty rare. Dr. Farrer is looking for unequivocal answers. He wants to know what the issue is from a molecular point of view down to a single protein. Once that is determined, Farrer and his team work backs to find out what that protein is doing in a cell, what that cell is doing in a brain and how the mutation discovered leads to disease. “The whole goal is to predict and prevent ,” Dr. Farrer says when asked about the chances of a cure. “Cure is a difficult term. I would like to prevent symptoms from progressing. I would like to slow down or halt the disease in people who already have a diagnosis. I would like to prevent it in subjects who may be destined, for example, because of their genetics.” In Kyoto, Dr. Farrer will be discussing new insights into the function of LRRK2 from a genetic point of view. The information may be a bit heady for folks who aren’t researchers, but if you’re interested, Dr. Farrer encourages you not to be intimidated by esoteric terms he may use. Farrer concludes, “Everyone’s coming to Kyoto anyway, it is a strange place for many, but it’s a wonderful place. Get immersed in it.” There are quite a few shout-outs to how beautiful Kyoto is. Here is a list of attractions that are listed by level of accessibility , which will help you plan which sites might be a best fit for your ability to get around the city. There is a magazine called Fokus . It’s like Sweden’s Time Magazine . Fokus’ 2018 Swede of the year in medicine was Sara Riggare . She was diagnosed with Parkinson’s in 2003. 18-years after her first symptoms first appeared. Riggare, co-chair of the Patients Advocate Committee for WPC2019, is self-described as a Parkinson’s “im”-patient. A chemical engineer by trade, she returned to school and is a PhD candidate researching digital self-c
Wed, March 13, 2019
Positive Impacts of Parkinson’s. WPC2019 | 2
After he was diagnosed with Parkinson’s, Tim Hague Sr. won the first season of “The Amazing Race Canada” and wrote a book called Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. In this episode, Tim and I chat about diagnosis, acceptance, finding balance, asking for help, building a community and why it is important for people with Parkinson’s to have a mindset of an athlete. Then we talk to Elaine Book, a social worker at the Pacific Parkinson’s Research Centre in Vancouver, BC. She’s involved with the Care Partner Lounge and will be speaking at the WPC about the impacts of Parkinson’s on children in the house. Then I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us the phrase Yoroshiku onegaishimasu , which means please treat me in a favorable manner. But, it can also mean ‘how are you?” It’s used particularly in a first meeting or when asking someone for a favour. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly, and be polite. Simply making the attempt to speak Japanese will be appreciated. You can read more info in this Global News article https://globalnews.ca/news/5048608/when-life-gives-you-parkinsons-podcast-positive-impacts/ Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Tim Hauge Sr., Author of Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined Elaine Book, Social worker at Pacific Parkinson’s Research Centre James Heron, Executive Director of Japanese Canadian Cultural Centre Learn more about your ad choices. Visit megaphone.fm/adchoices
Bonus · Wed, February 27, 2019
Hello. Konnichiwa. WPC2019 | 1
In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease. Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. In this episode, Jill Ames-Carson, the co-chair of the ambassadors program, can’t say enough good things about the congress, “The World Parkinson Congress changed my whole life and how I live with Parkinson’s. It gets everybody ‘Parkinsons’ in the same room together. Which is an absolutely amazing feeling, because you know you’re not alone.” She suggests those planning to attend review the program online or download it, before landing in Kyoto . The thermometer next to each session indicates the level of scientific discussion. The other symbols let you know whether it's a basic science, clinical science, or comprehensive care “As a person with Parkinson’s I would really advise you to attend things you’re interested in.” Dr. A Jon Stoessl, the co-chair of WPC2019, agrees noting some of the presentations will be very scientific, “It’s important for the meeting to be a top-notch scientific meeting and we truly believe that it is and so there are sessions that are targeted really only towards scientists.” This year, among the world renowned researchers and neurologists there will be a Nobel Prize winner. In our discussion, Dr. Stoessl mentioned the Pre-Congress Courses. These are full day courses that take place Tuesday, June 4. You can see what is being offered by visiting this page on WPC2019.org website . Both, Dr. Stoessl and Ms. Ames-Carson talked about pacing yourself. There is a lot to do, but if you have Parkinson’s, you will want to build in down time. If you need a break from sitting through educational sessions, the WPC has a variety of spaces where you can recharge or get some exercise. You can learn more about that on the wellness page of the website . As you prepare for your trip, Ames-Carson suggests you pack a pen, a pad of paper, and some small gifts from your home country to offer to new friends you’ll meet. The WPC offers other tips in its online Travel Tool Kit. Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This week we start with a simple hello. But, it’s not so simple. Depending
S1 E25 · Wed, February 20, 2019
Finding Hope in Parkinson’s | 12
I’m a fairly hopeful guy. Sure, I have dark moments as we all do but, hope wins out more often than not. You might be wondering how I can have hope or be hopeful while dealing with an incurable, progressive brain disease like Parkinson’s. It’s a fair question. I don’t know that I have the answers, but in this episode I go about searching for a better understanding of the role that hope plays in the Parkinson’s community. What I discover is that hope is the one driving force that binds us all together. No matter if you are a person with Parkinson’s, a caregiver, a nurse, neurologist, physiotherapist, counselor, general practitioner or a support group leader we are all dealing in hope. Dr. Matt Farrer is a Professor of Medical Genetics and Molecular Neuroscience at Pacific Parkinson’s Research Centre at the University of British Columbia. He is agenetic researcher who hopes his work will eradicate Parkinson’s. Last year, he mapped my genome and is set to reveal the results of those tests in this episode of the podcast. I also talk to Wendy Edey, a facilitator of Hope at “Hope Studies Central” at the University of Alberta, who has studied the impacts of hope as it relates to Parkinson’s disease. She says, “When you have hope you have the capacity to think about the future and be okay.” Someone who embodies the power of hope in my eyes is the Reverend Dixie Black. The Deacon of Christ Church Cathedral in Vancouver has been living with a Parkinson’s diagnosis since 2013. “Hope means to me trust. Trust that however it goes, I’m not alone and I’ll be taken care of.” In the episode we talk about hope as a common denominator to science and spirituality, we explore the concept of hope, where to find hope, how to keep it and the role it plays in the living our best lives despite the Parkinson’s diagnosis. I hope you listen. Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to Dr Matt Farrer and the staff at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/ . Follow the Centre for Brain Health on Twitter at @DMCBrainHealth . Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home <a href="https://thecathedral.ca
Bonus · Wed, February 13, 2019
Extra Dosage: Travelling and Catching Up With Family
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . I was diagnosed with Parkinson’s in August 2017. I haven’t seen my brothers Bruce and Dan or my sister Tracy since I received the news. That changed on January 31, 2019. Our Mom, who lives in Florida, invited us all down to stay in a beach house on Anna Marie Island on the Gulf Coast near Tampa. My siblings arrived separately along with some of their kids who now have their own kids. There were 18 of us in total. I was nervous. We haven’t vacationed together in 20 years. When we do get together for holidays or special events it is separated by years and we’re only together for a few hours at a time. And still, inevitably, someone ends up crying. But even before the family reunion part, I was nervous about flying. Vancouver B.C. to Tampa, Florida with a stop in Minneapolis, Minnesota is a long stretch of flying. I was concerned about timing my medication correctly as we skipped through time zones. I was certain my feet and legs would cramp and stiffen on the flight. This would be my first time traveling with walking sticks. And what if I start to tremor? What if I have an anxiety attack in the airport? What if… Deep breath. I can tell you now the anticipation was far more anxious than the trip. Everything was great. Here’s how I handled the airport. I wanted to be comfortable and confident, so I wore layers of loose fitting clothing including a shirt with a pocket for easy access to my passport and boarding pass. I used a backpack for carry-on items including a book, phone chargers, water, healthy snacks, and lots of Levodopa. (Do not pack your meds in checked baggage. I was happy to have it with me when we ran into seven hours of delays on our return trip.) Anytime I am in crowds, I use my walking sticks, so they came along for the ride too. When we checked in at the airline counter, I alerted them that I have Parkinson’s and would like to have a wheel chair or golf cart assistance at my layover in Minneapolis. I wanted to make sure I made the connection and didn’t exhaust myself traversing through four concourses. I also traveled with my wife and son, which gave me extra eyes and ears and peace of mind if I lost focus or became disoriented maneuvering the airport hallways and crowds. We always opted to pre-board to take extra time to get on board and get settled. Once on the plane, I sa
S1 E23 · Wed, February 06, 2019
Parkinson’s and the Caregiver’s Journey | 11
In this episode of When Life Gives You Parkinson’s we explore the role of the caregiver. Seeing as I’m a person with Parkinson’s and not a caregiver, my caregiver and wife Rebecca is featured prominently along with my co-host Niki Reitmayer and other caregivers Noel MacDonald and John Parkhurst. At the end of the episode, I chime in with a quick interview with Dr. Robert Duff about what caregivers need to do to make sure they’re taking care of themselves. At the end of the episode, Niki mentions a few resources for caregivers from Parkinson Canada which can be found here: Caregiving Webinar https://vimeo.com/168664929 Caregiver “Am I in Balance?” worksheet https://www.parkinson.ca/wp-content/uploads/Am-I-in-balance-taking-care.pdf Aside from being a wife, caregiver, mom, home school teacher, family chef and chauffeur, Rebecca is a writer. In fact, she’s a great writer. This week, for the podcast notes, I invited her to put pen to paper to express in her own words what it means to be a caregiver to someone with Parkinson’s. The following is written by Rebecca Gifford, caregiver and wife of Larry Gifford It happens all the time, all over the world. Two people love each other. You build a relationship, a partnership, and ultimately share a commitment and a life. You grow and make plans, hopeful for the future. Somewhere in the back of your head you know that something could happen that feels like the universe having a good chuckle at your expectations. It’s easy to dismiss these thoughts as “not right now” or “perhaps when we’re older.” Then one day you hear a faint belly laugh. One of you is diagnosed with something frightening, and everything changes. Of course everything shifts for the person with the disease, but the changes are as profound for those closest to them. Just as all families who are faced with a diagnosis do, we discovered a new path the day Larry was diagnosed with Parkinson’s disease. As his partner and wife, when it appeared before me I took his hand so we can walk it together. Sometimes it is joyful and beautiful—the opportunity to tell our story, to make a difference and connect with a remarkable community; the opportunity to offer life-shaping lessons to our son; a chance to clarify, simplify and rebalance our life. Sometimes it is sad or infuriating or frightening—grieving our pre-PD life, seeking balance in an ever-changing situation, adjusting to Larry’s uneven physical and energetic capacities, shifting the balance of our parenting roles, and facing endless uncertainty. Larry and I are reexamining and redefining our roles in our marriage, knowing we likely will need to do this again and again as the disease progresses. We are re-prioritizing our daily lives, while also di
Bonus · Wed, January 30, 2019
Extra Dosage | Peace of mind: Insights from a neuropsychologist
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . Parkinson’s doesn’t necessarily lead to cognitive impairment, but it can. The threat alone though makes think that every time I forget a word, have trouble with complex issues or can’t complete my Sudoku that I might be leaking brain power. Likely, I’m just freaking myself out. However, for peace of mind, there are ways to monitor and test cognitive function. I know in one my less grounded moments of perceived cognition erosion, my neurologist ran me through a battery of memory exercises. I checked out fine. Additionally, there neuropsychologists who work with neurologists to help evaluate cognitive abilities. Dr. Robert Duff, host of the Hard Core Self Help podcast, is a neuropsychologist who works with Parkinson’s patients on a regular basis. In this Extra Dosage, Dr. Duff and I speak candidly about Parkinson’s possible impact on the brain, mental health issues with Parkinson’s, what people can expect if going through a battery of neuropsych tests, and what he’s learned about PD after treating hundreds of patients. Additionally, he explains why it might be beneficial for everyone with Parkinson’s to take up a new hobby. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Special thanks to Dr. Robert Duff from The Hardcore Self Help Podcast Website: https://www.duffthepsych.com You Tube: https://www.youtube.com/duffthepsych Twitter: https://twitter.com/DuffThePsych Facebook: https://www.facebook.com/duffthepsych/ Instagram: http://www.instagram.com/duffthepsych For more info on our partner Parkinson Canada head to http://www.parkinso
S1 E21 · Wed, January 23, 2019
Parkinson’s Doesn’t Have to be a Career Killer | 10
In this episode, Niki and I talk to my colleagues and bosses about how their adjusting to my PD diagnosis, get advice from my neurologist Dr. Jonathon Squires, Neuropsychologist Dr. Robert Duff, and employment lawyer Lior Samfiru. I also chat with Jim Redmond about being a teacher with PD and Jonny Acheson about adjustments he’s had to make as an emergency room doctor who was diagnosed with Parkinson’s. 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 Kathryn Stewart, Dustin Collins, Dr. Jonathon Squires, Jim Redmond, Jonny Acheson, and Troy Reeb. Also Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/ Follow them on Twitter Brian Stever @SteverBrian Taylor MacGillvary @Taymacgillivary Jeremie Saunders @JeremieSaunders Dr. Robert Duff from The Hardcore Self Help Podcast Website: https://www.duffthepsych.com You Tube: https://www.youtube.com/duffthepsych Twitter: https://twitter.com/DuffThePsych Facebook: https://www.facebook.com/duffthepsych/ Instagram: http://www.instagram.com/duffthepsych Lior Samfiru B. A. (hons.), LL.B., partner Samfiru Tumarkin LLP Website: www.stlawyers.ca Twitter: https://twitter.com/stlawyers And special thanks to my wife Rebecca Gifford. For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ Here is a link to an article about Young Onset Parkinson’s which also discusses employment The toll free hotline is 1-800-565-3000 Or follow them on Twitter Parkinson Canada @ParkinsonCanada Parkinson Society BC @ParkinsonsBC Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer Learn more about your ad choices. Visit <a href="https:/
Bonus · Wed, January 16, 2019
Extra Dosage | Hope, Fear, Frustration and Levodopa
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . One of the main intentions behind this podcast was to demystify the Parkinson’s experience by sharing my story, the stories of people I meet along my journey and encourage others to share their Parkinson’s stories. When we share stories, we raise awareness of Parkinson’s, which attracts more donor dollars, to do more research, which hopefully one day will lead to finding a cure. I am encouraged from the responses I have received and am happy to report that as a community, those of us with Parkinson’s are sharing more of what we’re going through. To that end, in this Extra Dosage episode, I want to introduce you to Jim Richmond. Jim, 47, is a high school teacher and volleyball coach. He was diagnosed three years ago. Even though we are the same age and have some similar experiences, our stories are uniquely our own. I chat with Jim about symptoms, treatments, lifestyle changes, and everyday efforts to keep the disease from taking hold. After our conversation, Jim emailed to say he thought in our discussion he came across as more negative than his typical positive self. To me his story is authentic, honest and like most of us with Parkinson’s an ever adjusting mix of hope, fear, frustration and Levodopa. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to Jim Redmond. For more info on our 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 Parkinson Society BC @ParkinsonsBC Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Pro
S1 E19 · Wed, January 09, 2019
Fatherhood and Parkinson’s | 9
In this episode, you will meet my 9-year old son Henry, hear his infectious laugh and find out the one burning question he has about Parkinson’s. I think Henry might just want a normal Dad, not one with Parkinson's , my co-host Niki Reitmayer and my wife Rebecca try to convince me otherwise. On Saturdays, Henry and I go on adventures. We hang out, run errands, laugh, talk, and just spend time together. Father-son time means even more for me since my Parkinson’s diagnosis. I don’t always have the energy or ability to do the things we used to do and that will only get worse over time, so when we get the chance to connect, I relish it. Parenting is hard regardless if you have Parkinson’s or not. Parky can make things harder, however, it also allows me to demonstrate how I deal with adversity, teaches Henry empathy, the importance of philanthropy, and the value of quality time over quantity time. You will also hear from fellow father with PD Jonny Acheson about how he talks to his kids about Parkinson’s and how PD has changed how he approaches parenting. Singer Songwriter Emily Chambers was 12-years old when her dad was diagnosed and TeaParky.com creator Michael Chueng was 11. They both talk about what it was like to grow up with a Dad who has Parkinson’s and offer advice to my son Henry. Wondering how to talk to kids about Parkinson's? Check this link out https://www.parkinson.ca/wp-content/uploads/Talking-to-Children.pdf 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 Dan Gifford, Tracy Cherry, Jonny Acheson, and… Emily Chambers. You can check out her music at www.emilychambers.ca and follow her for future alerts about “Shake, Shake, Shake.” You Tube: https://www.youtube.com/emilychambersmusic Twitter: https://twitter.com/em_chambers Facebook: https://www.facebook.com/emilychambersmusic Instagram: https://www.instagram.com/em_chambers/ Michael Chueng. Check out his site www.teaparky.com and follow him. Twitter: <a href="https://www.instagram.c
Bonus · Wed, January 02, 2019
Extra Dosage | Happy New Year!
Learn more about your ad choices. Visit megaphone.fm/adchoices
Bonus · Wed, December 26, 2018
Extra Dosage | Christmas Greetings
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . ‘Twas the night before Christmas and all through the home One creature was stirring, it was Dad on his phone. Alone in the living room at half past three, Parkinson’s awoke him with an urge to pee. The kid was restless and then crashed in his bed, Visions of new race cars zoomed through his head. Mom awoke to a clatter, in bed all alone, She recognized the noise as Dad’s cramping foot moan. He tremored and shook down his arms and his legs, Anticipating breakfast and Christmas casserole eggs. Levodopa was downed and he stretched to the sky. He exercised reluctantly and let out a big sigh. While he was distracted, Santa sneaked in. Gifts were distributed by the tree with a grin. And then, after breakfast, they begin to unwrap Dad looks off in the distance, ready to nap. Christmas is full of love and tradition, Enjoyable for all, despite Dad’s Parkinson condition. A heartfelt Merry Christmas from the whole gang at When Life Gives You Parkinson’s. We’ll be back on January 8th will a new full episode of the podcast focusing on Parkinson’s and Fatherhood. If you have Parkinson’s there are few things our friends at The Michael J. Fox Foundation and Parkinson Canada recommend you consider over the holidays. Do not forget to exercise. Keeping active will help boost your spirits and keep your sleep schedule intact. Take your medication as prescribed. This is especially difficult and confusing when you cross time zones. When traveling take an updated copy of your medication list and bring medications in their bottles in your carry-on when flying. Mind your diet. A healthy Parkinson’s diet is full of fruit and vegetables. Candy and cookies are tempting treats, and family dinners make is easy to overdo it on food and wine. As with everything, moderation is the key. Drink lots of water and remember your balance issues will only increase with alcohol consumption. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: <a
S1 E16 · Wed, December 19, 2018
The Search for a Cure Starts With Fundraising | 8
In this episode of When Life Gives You Parkinson’s, I talk to people behind several Parkinson’s fundraisers, learn about their experiences with the disease and meet the researchers who benefit from the funds raised. I also let you follow me into Dr. Farrer’s lab as I donate my DNA. 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: Emily Chambers. You can check out her music at www.emilychambers.ca and follow her for future alerts about “Shake, Shake, Shake.” You Tube: https://www.youtube.com/emilychambersmusic Twitter: https://twitter.com/em_chambers Facebook: https://www.facebook.com/emilychambersmusic Instagram: https://www.instagram.com/em_chambers/ Michael Chueng. Check out his site www.teaparky.com and follow him. Twitter: https://www.instagram.com/teaparkydotcom/ Facebook: https://www.facebook.com/TeaParky/ Instagram: https://www.instagram.com/teaparkydotcom/ For details on Porridge for Parkinson’s and The Pacific Parkinson’s Research Institute www.pacificparkinsons.org and follow them. Twitter: https://twitter.com/PPRI__ Facebook: https://www.facebook.com/PacificParkinsons/ Drs. Matthew Farrer, Silke Cresswell, and A. Jon Stoessl at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/ . Follow the Centre for Brain Health on Twitter at @DMCBrainHealth . Dr. Farrer’s researchers Jesse Fox and Emil Gustavason. And special t
Bonus · Wed, December 12, 2018
Extra Dosage | Understanding the Gut-Brain Connection
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . The appendix. Until November 1, 2018, I didn’t know it served a purpose in the human body. Global News and other news outlets around the world reported on an exciting research discovery that people who had their appendix removed early in life had a lower risk of getting Parkinson’s later in life. After some research of my own I discovered the appendix actually helps the immune system detect and eliminate harmful microorganisms, while regulating gut bacteria. What’s the connection to Parkinson’s? Well, it turns out a healthy appendix contains alpha-synuclein. Alpha-synuclein is the key protein that builds up in the brains of people with Parkinson’s. The news about the appendix and Parkinson’s further confirms much discussed theories that there is a direct connection between gut health and brain health. One of the researchers focused on better understanding the importance of gut health and our microbiome as it relates to Parkinson’s disease is Dr. Silke Cresswell. She is an assistant professor in the division of Neurology at UBC. In this Extra Dosage episode of When Life Gives You Parkinson’s I sat down with her at the Djavad Mowfaghian Centre for Brain Health at UBC for the Pacific Parkinson’s Research Centre . We discuss microbiome, the appendix, diets, constipation and what she’s uncovered in her research. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to Dr. Silke Cresswell and the Djavad Mowfaghian Centre for Brain Health at UBC https://www.centreforbrainhealth.ca/ . Follow the Centre for Brain Health on Twitter
S1 E14 · Wed, December 05, 2018
Exercise is a Real Prescription for Parkinson’s | 7
I have never been very athletic. I have never been excited by thinking about or participating in exercise. The idea of a daily workout, gym memberships, exercise classes or scheduled physical activity of any kind has always been something other people do. In August 2017, my neurologist Dr. Jonathon Squires at the Djavad Mowafaghian Centre for Brain Health at UBC gave me a prescription for levodopa-carbidopa and a serious recommendation to exercise. Dr. Squires told me, “The only thing we know so far that slows the progression of Parkinson’s disease is physical activity. It does help control the symptoms and it does help slow the progression as far as we know. So it’s very important.” Never one to accept exercise as the answer suggested the medication might be enough. Dr. Squires rebutted, “In some ways, I feel like all the medications that we use are really just to enable people to exercise.” That’s when I realized this exercise thing is real, but I wanted to know why. I sought out Dr. A Jon Stoessl. He’s the head of Neurology at UBC, co-director of the Centre for Brain Health and one of the neurologists that has been researching the benefits of exercise for people with Parkinson’s disease. I asked if there was anything else aside from exercise I could explore. Anything. Anything? Dr. Stoessl didn’t hesitate or cushion the blow. The answer was no. He explained, “In fact, we don’t have any medical treatments that have been shown to have an impact on disease progression. So, we can treat the symptoms, but we don’t end up treating the underlying disease. Exercise may actually be the way to do that.” Research results suggest an exercise routine that consists of a combination aerobic and resistance training, four days a week, for a half-hour each day. Dr. Stoessl told me if I can still carry on a conversation while I’m working out, I’m not working out hard enough. He also offered this advice, “Do what you hate the least, because it’s no good someone prescribing you a half-hour on the treadmill every day, if you will never get on a treadmill.” So what exercise do I hate the least? In this episode of When Life Gives You Parkinson’s I explore a variety of exercises in search of one or some that I can commit to. I lace up boxing gloves for a Rock Steady Boxing class in at Impact Parkinson’s in New Westminster. Trainer Robyn Murrell takes people with Parkinson’s through circuit training, “You’ve got your foot work, hand-eye coordination, balance, cognitive, and speed. They can all relate somehow to all the different symptoms of Parkinson’s.” She notes the results are beyond the physical improvements, “It gives them a lot more confidence. I think that’s the biggest thing that I see.” Through my search for an exercise right for me, I visit Rain City Fitness to try Cross Fit with Hilary Vanderliek. She was diagnosed with Parkinson’s when she w
Bonus · Wed, November 28, 2018
Extra Dosage | Puppies and Parkinson’s
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . It’s been nearly six years since our family lost our beloved beagle Pepperjack. Rebecca and Henry have been pining for a dog for years. Unfortunately, we tend to rent homes that have strict no pet policies. To our surprise and delight, our current landlord recently had a change of heart and suddenly was amenable to a small dog. The excitement in the Gifford house was palpable. For once, the trembling and shaking was coming from them and not me. With the green light to get a pup, the hunt was on. Rebecca was the General of “Operation Puppy Procurement.” Phones calls were made, emails written, DMs and texts were sent into the ether. Within 48 hours we went from dog less to dog obsessed. We traveled 45 minutes to a chicken farm where we fell in love with a small, adorable, 8 week old puppy. She was a Cavalier, Pug, French Bulldog, and Boston Terrier mix. By the time we arrived home, we had named her Luna Love Gifford (an homage to a favourite Harry Potter character), spent hundreds of dollars at the pet store, and our cheeks were sore from smiling so much. Puppies are tough. We knew that. We were ready for it. We warned our 9-year old son. We’d done this before and knew it was hard work. But… I didn’t have Parkinson’s when we adopted Pepperjack. The disease challenges my walking and balance, increases anxiety, makes it difficult to sleep, and symptoms only intensify with stress. A five pound puppy with boundless energy, racing around my feet, needing to go outside throughout the night also challenges walking and balance, increases anxiety, makes it difficult to sleep and frankly, stressed me out. After two weeks, Rebecca and I looked at each other one evening and we both knew we had rushed into puppy parenthood without proper consideration of the other new member of our family: Parkinson’s. Through tears of sadness and waves of embarrassment, we quickly found Luna a new forever home. It was a wake-up call that Parkinson’s plays a part in every decision we make. And will for the rest of our lives. In this Extra Dosage episode, Niki Reitmayer invites Rebecca and I into the studio to talk about our puppy predicament and the lessons we learned If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: <a href="https://www.
S1 E12 · Wed, November 21, 2018
Popping Pills, Swapping Stories – Inside a Parkinson’s support group | 6
It’s hard to admit it when you need help. It’s even harder to make the phone call, ask questions, commit to showing up, walk into a room full of strangers and share things that still remain secret to the closest people in your life. I’d never been in a support group before I was diagnosed with Parkinson’s. I didn’t know what to expect. I wondered how my Parkinson’s would measure up and if I was too young, too healthy, or too whatever to be accepted by those who bravely showed up for these meetings long before I did. Maybe I could tough it out. Maybe I could deal with this on my own. Maybe I was being ridiculous. 10 million of us have Parkinson’s. We’re all dealing with this interesting, unpredictable, degenerative, life altering, sucky disease. Those of us with PD, know the struggles, the questions, the ups and downs and each us of deserve support. Turns out great things happen when five or ten of us cram into a conference room each month. I’ve met new friends: John, Linda, Lee, AJ, Richard and Tony. Some are newly diagnosed, others have been living with PD for many years. Each gathering we laugh, share stories, ask questions of each other, offer unsolicited advice, and nod knowingly as one-by-one we discuss medication, symptoms, and struggles. We don’t always agree on the best way to approach the disease. Some have found peace with it and others would like to tear it to pieces. Some befriend it, others bemoan it. Some accept it, others reject it. Some are grateful for the gifts it’s given them, some shower it with profanity. Some offer it a name like Parky, while others can barely utter the “P” word to begin with. It’s okay. People in your support group meet you wherever you are. You might be depressed, inspired, angry, confused, exhausted, or content. It doesn’t matter. I… they… we will support you and you deserve the support. In this episode of When Life Gives You Parkinson’s, I take you inside my support group to demystify the experience and give you a first-hand perspective of what it’s like. Co-host Niki Reitmayer talks to Kelly Williams, a clinical resource nurse at the Movement Disorder Clinic in Winnipeg, about support options for people who live in rural areas many hours from traditional support services. For the first time since my diagnosis, my wife Rebecca discloses she is now ready to explore support group options for care partners. 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 Caroline
Bonus · Wed, November 14, 2018
Extra Dosage | Lights! Camera! Action! Parkinson’s!
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . I took piano lessons in college. I really enjoy stumbling upon a piano, sitting down and letting my fingers find the music. I’m not great and I don’t have regular access to a piano. So, last winter when I sat down at a piano for the first time in a while, I was surprised and disappointed to discover Parkinson’s had stolen what little piano talent I had and made it into a musical mush. My brain doesn’t communicate as fast to the right side of my body as it does to the left, so while my left hand danced across the keys, my right hand tripped and stuttered like a baby fawn learning to walk. I can only imagine the frustration and exasperation I endured would be magnified exponentially if I was a professional musician. And that’s the premise for The New Music , a new Irish feature filmabout a classical pianist with Young Onset Parkinson’s Disease (YOPD), a rare form of Parkinson's disease affecting those under sixty. The New Music follows the struggles of Adrian, a gifted classical musician, who discovers he has YOPD. Despite this debilitating condition, Adrian (played by Dublin actor Cilléin Mc Evoy) joins a punk band as a keyboard player and rediscovers his life through music and friendship. Writer and Director Chiara Viale has been working closely with Young Parkinson's Ireland to make sure the film accurately portrays the Parkinson’s experience. Viale and lead actor Mc Evoy join Niki Reitmayer and I on this episode of When Life Gives You Parkinson’s to discuss the movie, Parkinson’s and how you can help them finish the film. If you are a musician with Parkinson’s and want to share your story with us, please email parkinsonspod@curiouscast.ca Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Follow The New Music Film Twitter: @thenewmusicfilm Fac
S1 E10 · Wed, November 07, 2018
Shaking the Stigma of Depression and Anxiety | 5
Since my diagnosis, I’ve experienced panic attacks, anxious days of feeling inadequate and stretches of melancholy and mourning my life before Parkinson’s. In this episode of the When Life Gives You Parkinson’s podcast we explore anxiety and depression as symptoms of Parkinson’s disease and how people are dealing with these and other hidden symptoms of Parkinson’s. “I was afraid the building would collapse and I wouldn’t be able to get help.” Hilary Vanderliek,our guest this week, lists anxiety as one of her “hidden” or non-motor symptoms of Parkinson’s disease. “I usually start panicking if I feel like I can’t get a hold of somebody or I need something that I can’t have. Whether it is someone helping me, or getting water or pills, or changing my outfit so I’m more comfortable, or me needing to go to the hospital because they’ll be able to help whatever issues I’m having.” Issues she describes as feeling stuck, shaking so bad she can’t walk or being so weak she can’t move to get to where she needs to go. When it comes to Parkinson’s most people are aware of the tell-tale tremors. I, and others, also have issues with our gait which makes walking more difficult. People with Parkinson’s are slow to initiate movement, have balance issues, and muscle rigidity. But, those are all motor symptoms you can see. There are a whole host of other symptoms people with Parkinson’s deal with that you may never know. Parkinson Canada details 27 of these symptoms on its website including difficulty swallowing, pain, sexual dysfunction, and insomnia. Anxiety and depression also made the list. Experts now say more than half of all people with Parkinson’s will develop anxiety or depression . Depression and anxiety in people with Parkinson’s is not solely a reaction to the diagnosis. Most often it’s due to changes in brain chemistry, circuits and neural pathways that control your mood. Long before his Parkinson’s diagnosis, the initial symptoms for Tony Dawson, 76, were more psychological than physical. “They tended to circle around a feeling of depression which I had not been used to feeling earlier in my life.” And it’s not just a case of, “Oh, I feel bad today.” Everyone gets that feeling from time to time. “(Depression) is that persistent feeling and sadness that you have,” says Kimberly Singian RN, who authored a paper in the Canadian Medical Association Journal on depression and Parkinson’s . “Feeling fatigued, even feelings of guilt and being worthless. Your sleep can be affected, your appetite and also your weight.” Symptoms of anxiety may include nervousness, worrying, feeling jittery, and may not have a dir
Bonus · Wed, October 31, 2018
Extra Dosage | I’m the World’s Leading Expert in My Parkinson’s
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . I get asked a lot questions about Parkinson’s disease. Online, in person, over email and on social media I have made myself vulnerable and available. I’m happy to discuss my experience and my limited knowledge of the disease, symptoms and its treatments. I’m not an expert in Parkinson’s, but I am the world’s leading expert on MY Parkinson’s. This week, my brain power was put to the test by students at Kwantlen Polytechnic University. Dr. Dianne Crisp invited my podcast co-host Niki Reitmayer and me into her classroom. She teaches a psychology course all about brain science and dedicates many hours of class to Parkinson’s disease. We recorded our question and answer session with students. They asked many questions about onset triggers, L-dopa, sleep, family, symptoms, treatments, my future, and more. 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 Kwantlen Polytechnic Institute and Dr. Dianne Crisp. For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline mentioned in this episode is 1-800-565-3000 Or follow them on Twitter Parkinson Canada @ParkinsonCanada Parkinson Society BC @ParkinsonsBC Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer Learn more about your ad choices. Visit megaphone.fm/adchoices
S1 E8 · Wed, October 24, 2018
The Search for Sound Sleep: A Virgin Voyage with Cannabis Oil | 4
One of the more common symptoms for people with Parkinson’s is trouble sleeping. Some of us can’t get to sleep, some can’t stay asleep, while others are awaken by tremors, painful dystonia cramping or realistic nightmares. I can’t stay asleep. My sleeping journal is more of an awakening journal. One day it reads “up at 3a,” the next “up at 1a,” followed by “up at 3a, up at 3:30a, and up at 4:20a.” I’ve tried Melatonin, Magnesium Glycinate, light therapy, aromatherapy, silence, music, meditation, reading, more levodopa, later bedtimes, earlier bedtimes and the list goes on. Sleep is important for everyone. When you don’t get enough sleep you are less productive, less attentive, less present, less creative, less active, less everything it seems except tired. WebMD suggests it also puts you at “greater risk for depression, heart attack, stroke, high blood pressure, diabetes and death.” I know you’re not supposed to believe everything you read on the internet, but it’s WebMD. Right? I’m also told by researchers that sleep is the time your brain needs to redistribute chemicals into all of its nooks and crannies and for your mind and body to assimilate after each day’s journey. (Both points seem especially relevant when you have a degenerative brain disease which is triggered by the lack of production of the brain chemical dopamine.) One of my doctors suggested if I don’t get regular REM sleep, I am increasing my risk of a mental meltdown. Needless to say, sleep is an issue that I must address. My neurologist suggested Mirtazapine, an antidepressant that is also apparently a good sedative. It also causes an increased appetite and weight gain. Neither of which I need right now. I suggested an alternative. As Canada legalizes Cannabis, I asked, “What about CBD Oil?” For transparency, I’m not a pot smoker. I have before, I inhaled, and I liked it well enough. But, I never smoked weed regularly and have not recently. My neurologist didn’t discourage me and suggested it wouldn’t hurt to try, but it is trial and error. I did some homework. In discussions with users and by reading about CBD Oil, there are a few things I learned. Cannabis is hit and miss. Some in the Parkinson’s community swear by it and others who’ve tried it never found it to be effective. I’ve heard from several sources it’s a 50/50 proposition. There is no prescription. How much to take, when to take it and how to take it are up to you to discover and debate. It’s fairly intimidating. Some days I feel like I couldn’t make ramen without the instructions on the package. I brought this up to Barinder Rasode, the founder of the National Institute for Cannabis Health and Education. She agreed with me, “I share your frustration about no knowing how much or what type of Cannabis to take.” She had to do trial and error when figuring out her own regiment of CBD oil for her sleeping issues. Rasode is bullish on cannabis a
Bonus · Wed, October 17, 2018
Extra Dosage | A check-up with my doctor and a check-in with my siblings
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . Every six months I go to the neurologist. Each time, he runs me through the same battery of tests. You can see him put me through these tests in this video https://globalnews.ca/video/rd/1320906819867/?jwsource=cl . I just saw him again, did those same tests, and my symptoms appear to progressing. It’s not the news anyone wants to get. It’s not the news we expected to get. I even challenged my neurologist. I said, “Uhh, I thought this disease was slow moving. This doesn’t seem slow moving.” He agreed. Once again, he’s increased my levodopa-carbidopa dosage. While I had his attention, I brought up the fact that I’m having a terrible time staying asleep. I’ve tried nearly everything it seems from meditation, light therapy and aroma therapy to Magnesium Glycinate and Melatonin. There are two more options on the table now. In this Extra Dosage, I discuss my options with co-host Nike Reitmayer and it results on our embarking on a journey. After my neurology appointment, I texted my brothers Bruce and Dan and my sister Tracy to update them on the Parkinson’s. I really do not relish delivering bad news. I know they are holding out hope and praying hard for my health to improve. Hearing me explain about progressing symptoms and increases in medication every six months must be difficult to digest. We grew up in a home where humour was used to defuse tension. So, in my texts I often use self-deprecation and Parkinson’s jokes to lighten the mood. Those moments of levity are often greeted with a heavy silence. Not even a hapless emoji in response. I can almost hear them moan across the international border. So, I confront them about it. What about this disease makes it so difficult to joke and laugh like we used to when we confronted life and death issues with relatives growing up? What I learned is that my perception is not necessarily reality. 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
S1 E6 · Wed, October 10, 2018
Disease Guy, getting recast in your life story, and other things you can't put on your LinkedIn | 3
I wish I didn’t have Parkinson’s. You wish I didn’t have Parkinson’s. In fact, as far as I can discern no one is really happy about it. My Parkinson’s is inconvenient and uncomfortable for everyone involved. That uncomfortableness has led me to apologize for having it. I have moments nearly everyday when I try to make people feel better about my diagnosis and symptoms. (Frankly, I always thought it was supposed to be the other way around.) But, I suppose I shouldn’t be surprised. We all play roles in each other’s lives. We’re cast. I’m the baby brother, the college buddy, ‘Smokey the sports radio guy’ and more. For each person in my life, I played a particular part. The inconvenience and uncomfortableness arises from the reality that no one cast me as ‘disease guy.’ It can be really awkward and depressing to face realities of disease — for everyone. In August 2017, Parkinson’s hijacked my storyline and recast me in your life story and mine. Now, in addition to high school theatre geek, loving husband and wine lover, I’m Larry with a degenerative brain disease. Unfortunately, I don’t think that’s a skill set I can to add to my LinkedIn profile. Yes, I wish I didn’t have Parkinson’s. I am, however, grateful that my story continues to be written. Parkinson’s has given me an opportunity to update my character and made me realize that as people change, our narratives about them need to be rewritten too. In a rather healthy way, disease actually jumpstarts that process and forces people to see others in a new and different light. In this episode of “When Life Gives You Parkinson’s”, my Mom, my wife Rebecca, my co-host Niki and I examine the roles we’ve accepted in each other’s lives, how we feel about those roles changing and what we can do to keep moving forward in life. Follow Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ Or follow them on Twitter Parkinson Canada @ParkinsonCanada Parkinson Society BC @ParkinsonsBC Thank you Courtney Doherty, registered clinical Counselor at Parkinson’s Society. Thank you as always to my wife Rebecca Gifford and my mom Marty Gifford Thank you to @SickboyPodcast – check them out here <a href="http:/
Bonus · Wed, October 03, 2018
Extra Dosage | Love and Strength Through Adversity
I love my wife. Rebecca and I just celebrated out 19th wedding anniversary. Last year, we were both thrown for a 20-yard loss when I was diagnosed with Parkinson’s disease. But a year later, we’re marching forward and trying to make the most of each moment of every day. Rebecca keeps me positive, motivated, grounded and focused on the present moment. She’s full of strength, love and wisdom. What I wasn’t as conscious of was how much the disease has already changed the way I am around the home. In this episode, Rebecca talks to Global News reporter Neetu Garcha about how she is dealing with the diagnosis, how it’s impacted our everyday life and how she and my son have had to adapt and adjust their expectations of what I can do. “I am in awe of him as much as he’s thriving,” said Rebecca. “But, I also see the challenges. Maybe I see it more than anybody else. And that’s heartbreaking, at times, to watch the disappointment and the frustration when there is something new that crops up.” Warning: This interview triggered tears for me and it might for you. Rebecca shared with Neetu, “It’s deepened my love for him to see how he’s managing all of this and still finding so much to take from it, to offer to us and to offer to the community.” Parkinson’s can shake up life and relationships, but as with all adversity, it can also strengthen bonds of love and bring more meaning and purpose to each day of living. The interview Rebecca was recorded while filming a three-part series about Parkinson’s for Global News. Part One: ‘I’m arriving with each step:’ B.C. man creates podcast on learning to live with Parkinson’s Part Two: Game-changing UBC research into Parkinson’s Disease Part Three: One Parkinson’s patient to another: ways to cope with the condition Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Special thanks to Rebecca Gifford and Neetu Garcha ( @neetugarcha ) For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ </p
S1 E4 · Wed, September 26, 2018
Sharing the news, saying I love you, and "The Larry Filter" | 2
On April 4, 2017 I texted my brothers and sister. It read, “Hi all... news of a sort from up north. For some time now, I've been experiencing issues on the side of my body leading to foot dragging/clomping, favouring my left hand over right for many tasks, slurred speech at times... life threatening issues have been eliminated. Today I went to the MS clinic for tests. MS is very unlikely, but it appears I have something in the Parkinson's family. I've been referred to a specialist, will be getting a brain MRI and will be taking drugs to increase dopamine which should relieve my symptoms. I would encourage you not to worry, it seems under control and we aren't exactly sure what it is yet. But I wanted to make sure you were all in the loop. Love, Larry” That text provoked many emotions from my siblings: shock, sadness, devastation, confusion, anger, and guilt. In this episode, you’ll hear the most intimate conversations I have ever had with my two brothers and sister. I talk to Bruce, Dan and Tracy about that text, my Parkinson’s, our fears, and unconditional love. I also learn what the “Larry filter” is and I answer their questions about living with Parkinson’s. When you get Parkinson’s disease it makes you reevaluate your relationships, how you live your life, your priorities, everything. These conversations are part of that process for me. What I discovered is that while it is my diagnosis, Parkinson’s is given to everybody in your life. It impacts each person in some way. 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 Bruce Gifford, Dan Gifford, Tracy Cherry and Rebecca Gifford for being an important part of my life and this story. For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline mentioned in this episode is 1-800-565-3000 Or follow them on Twitter Parkinson Canada @ParkinsonCanada Parkinson Society BC @ParkinsonsBC Credits Parkinson Canada – Podcast Partner Dila Valazquez – Story Producer Rob Johnston – Audio Producer and Sound Design Learn more about your ad choices. Visit megaphone.fm/adchoices
Bonus · Wed, September 19, 2018
Extra Dosage - What’s Up Doc? Larry talks to his Neurologist
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca . From the time my hand started to tremor to the time of my Parkinson’s diagnosis I’d seen my family physician three times, been poked, pushed, pulled and tested by two neurologists and some residents, had blood tests, an ultra sound, an MRI, lost many hours in doctor office waiting rooms and chewed my fingernails to the quick – a couple of times. It was eight months of not knowing. And I was lucky. Some people are waiting years. It is not as if putting a label on my strange symptoms made it better or even go away, but for me it is just a relief to know it is something. But why is Parkinson’s disease so hard to diagnose? In this Extra Dosage episode of When Life Gives You Parkinson’s, I talk to my neurologist and pepper him with questions that I’ve never asked him before. Why is it hard to diagnose? What would he do if he was diagnosed? Is there really a gut health connection? What should I ask in my check-ups? What’s he looking for? And more. I find Dr. Jonathon Squires frank, funny, authentic, and accessible. I hope you do to. Meanwhile, Niki sits down with a Sandie Jones and Grace Ferrari at Parkinson Canada. Sandy pre-dates the Parkinson wonder drug levodopa. She shares her experience with Parkinson’s as a nurse in the early 1960’s. After hearing what it was like, I’ll likely never complain about having to take my pills so often. Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer I see Dr. Jonathon Squires at the Djavad Mowafaghian Centre for Brain Health at UBC. You can find more information about the centre here https://www.centreforbrainhealth.ca/ For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline mentioned in this episode is 1-800-565-3000 Or follow them on Twitter Parkinson Canada @ParkinsonCanada Park
S1 E2 · Wed, September 12, 2018
The Diagnosis: constant companion & frenemy | 1
My name is Larry Gifford . I am 46 and navigating life with a degenerative brain disease, which has no cure. I was diagnosed with Parkinson’s disease in August 2017 after years of collecting what I thought were disconnected symptoms. I shuffled when I walked, I lost my sense of smell, and eventually it was tremors that scared me enough to seek help. On this week’s episode , my co-host Niki Reitmayer , and I explore my diagnosis, the symptoms, the drugs, and the emotions. I take you into my home to find out how my wife Rebecca and 9-year old son Henry are dealing with it, get inspiration and perspective from Nashville singer-songwriter Emily Chambers whose Dad has Parkinson’s and refreshing frankness from my appearance on the Sickboy Podcast . A Parkinson’s diagnosis is tough in many aspects; it’s clinically difficult for neurologists, it is personally difficult for friends and family, and it’s physically, emotionally and mentally taxing on the person with it – is it a frenemy for life? Follow Larry Gifford – He has Parkinson’s Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer For more info on our partner Parkinson Canada head to http://www.parkinson.ca/ Or follow them on Twitter Parkinson Canada @ParkinsonCanada Parkinson Society BC @ParkinsonsBC Thank you to Caroline Wiggins Alicia Wrobel for your help Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/ Follow them on Twitter Brian Stever @SteverBrian Taylor MacGillvary @Taymacgillivary Jeremie Saunders @JeremieSaunders Lastly, thank you to Emily Chambers https://www.emilychambers.ca/ Follow her on Twitt
Trailer · Fri, June 29, 2018
Welcome
I'm Larry Gifford, I have Parkinson's disease. I'm one of 10 million people diagnosed by a disease people know very little about, so, I will be sharing my personal journey into what it’s like to live and work with Parkinson’s disease as a 40-something husband and father with a career. Podcast will be released in Sept. but please subscribe now so you don't miss a single episode. Learn more about your ad choices. Visit megaphone.fm/adchoices
loading...