When Life Gives You Parkinson's

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

A weekly chat

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

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