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
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5:13
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
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13:16
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
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8:41
PD Avengers: 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
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6:39
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.
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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 co-hosted by then-radio personality Niki Reitmayer until 2020 when Larry’s wife Rebecca takes on the role. Special thank you to our partners. Presenting partner is Parkinson Canada, content and promotional partner Spotlight YOPD, and The Michael J. Fox Foundation for Parkinson’s Research Parkinson’s IQ + You, PD Avengers, World Parkinson Congress #WPC2023 in Barcelona, Spain.
Netherlands