On the Edge of Disease-Altering Drugs and a Bio Marker

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

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

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

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

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

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

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

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

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

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