Dialing in DBS and Sorting Through the Data with Rune Labs CEO Brian Pepin

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: [email protected] 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.

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.

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: [email protected] 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.

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: [email protected] 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.

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.

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: [email protected] Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design 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.

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: [email protected] 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.

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: [email protected] 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

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

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: [email protected] Have questions, comments, or a story idea? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners The Michael J. Fox Foundation’s landmark study Parkinson's Progression Markers Initiative (PPMI)    PD Avengers – We are building a global alliance to end Parkinson’s. Join us. World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.