The Secret Life of Parkinson's

This is our 2nd episode with our PD friends, Mike and Bob. In this episode, they share things they've noticed since their last podcast episode (#136) in March 2025 (8 months ago). The conversation dives into more personal experiences living with Parkinson's, exploring the emotional and psychological challenges faced by individuals diagnosed with the condition. It highlights the importance of suppo...

In this episode, we had Lesley Sittler talk to us about her dad who was diagnosed with Parkinson's disease, our Producer, Steve Brandenburg. 0:00 Intro 1:20 Finding out my dad had Parkinson's 4:25 Jess having a brain fart on not remembering Steve's diagnosis story (I actually knew but forgot) 6:00 Dad was always invicible to me 7:40 How I felt 8:30 Making Lemonade out of Lemons 9:37 The grandkids...

In this episode, Melissa and Jess talk to Mike Willingham who was diagnosed 1 year ago. He talks about his diagnosis journey and most importantly his words of encouragement for others. Don't stop living life. Make adjustments, but you are still YOU! Chapters: 0:00 Introduction and Diagnosis 1:31 Diagnosis journey 8:46 Body's response to medication and exercise 11:16 Difficulty accepting diagnosis...

This weekend we attended the APDA Young Onset Parkinson’s Conference in Seattle — and we left with new friends and a full heart. In this episode we talk about what it was like to be surrounded by people who get it, what we learned from others living with YOPD, and why connection changes everything. We interviewed a 21 year old with Parkinson's, Lily, and her experience being so young. We also had...

In this episode, Melissa and Jessica meet with John Hoover, Publisher of Sooner On SI (a Sports Illustrated channel). He shares his personal journey with Parkinson's disease, discussing his diagnosis, the challenges he faced, and the importance of advocacy and community support. He emphasizes the significance of open communication about the disease, the impact of medication management, and how hob...

In this episode, Jessica and Melissa welcome Skipper Darrell from Colorado, who shares his journey of living with Parkinson's disease since his diagnosis in February 2023. Darrell discusses his passion for long-range cruising and how he continues to pursue his love for boating despite the challenges posed by Parkinson's. The conversation delves into the importance of support groups, the impact of...

0:00 - 0:54 Intro (Brian is on a work trip) 0:55 - 2:33 Changing Parkinson's 2:34 - 3:28 Ask me about my secret life (Parkinson's stories) 3:29 - 5:15 YOPD CON 2025 in Seattle, Washington 5:16 - 9:05 Parkinson's stories 9:06 - 11:00 Jessica's DBS (deep brain stimulation) update 11:01 - 12:12 Adaptive DBS (deep brain stimulation) and Jess's explanation on how it works 12:13 - 13:43 Charge your DBS...

In this episode, Anne Marie O'Connor, shares her personal journey with Parkinson's disease, discussing her career in fashion, the challenges of her diagnosis, and the importance of support systems. She emphasizes the need for self-compassion and the lessons learned through her experiences, including the writing of her book 'Twitch' as a means of processing her journey. The conversation highlights...

Just like some cancers and other chronic diseases, Parkinson’s and other neurological conditions are increasingly linked to environmental factors. In this episode, we explore the science of prevention — from pesticides and pollutants to lifestyle choices — and hear directly from Dr. Ray Dorsey sharing his latest book: The Parkinson’s Plan. In this episode, Ray shares their findings over the years...

In this episode Brian and I got to do something really special—interview my twins, Ben and Kate. We spoke mostly about my recent Deep Brain Stimulation (DBS) surgery—what it’s been like emotionally and physically, and how it will hopefully change my life with Parkinson’s. Ben and Kate shared their perspective as young caregivers—how they cope, what they’ve learned, and what advice they’d give to o...

In this episode, we dive into a topic that might not sound exciting at first, but it’s one of the most important things you can do for yourself and your family—Elder Law and Estate Planning. I’ll be honest, it’s easy to put off, but the truth is, planning ahead takes away so much stress later. Our guest, Larae Schraeder, emphasizes the need for proactive planning to avoid potential pitfalls and en...

You want the latest updates on freezing of gait? PSP? Lewey Body? Tremor or dystonia? Apathy or depression? Introducing Jessica Dove London (for a second time), launching a new AI - personalized tool - for you...Turny. We first met Jessica Dove London when she launched the app, TurnTo AI for Parkinson's...a community AI platform where you can ask questions and get answers from AI/websites or the c...

This episode is so interesting! Brian and I talk to Matthew Moore and Robert Cochrane about the multifaceted journey of living with Parkinson's disease, highlighting personal stories, creative expressions, and the innovative concept of Cinema Therapy. Matthew and Robert talk about a new film they are developing centered on Parkinson's, emphasizing the importance of acceptance, community, and story...

In this episode, Brian, Melissa, and I dive into a pretty big topic—my upcoming deep brain stimulation (DBS) surgery for Parkinson’s. We talk through what the lead-up has been like, both medically and emotionally, and what I’m hoping for as I head into this next step. We also get into how Parkinson’s continues to shape our lives, what it’s taught us, and how crucial support from family (and each o...

In this episode, Tim Lockard (  @MYPDPARTY  ) shares his journey with Parkinson's disease, discussing the importance of community, advocacy, and personal health regimens. He emphasizes the need for acceptance and the positive impact of support systems in navigating the challenges of Parkinson's. The conversation also touches on medication, treatment options like deep brain stimulation, and the tra...

Jessica going to the doctor: "Here are a few notes I wrote on paper. Oh! I captured a video on my phone somewhere to see my gait. Wait, did I mention I now go through two pharmacies?". And this is nothing. Many of those living with Parkinson's are also living with things like: cancer, diabetes, heart disease, surgeries, etc. And the caregivers I talk to all say the same thing: "I can't keep it all...

You know The Secret Life of Parkinson’s podcast — but what you may not know is that it sparked something even bigger. Through the stories we’ve shared and the people we’ve met, the podcast pushed us to reimagine what our nonprofit, the 5KforJK could be. What started as a single 5K in honor of Jessica’s diagnosis has grown into "Changing Parkinson’s"—a movement to help people live better with PD, t...

Parkinson's Foundation Helpline: 1-800-4PD-INFO In this episode, Jessica and Brian met with Linda, a representative from the Parkinson's Foundation to talk about the helpline's purpose, the types of questions it addresses, and the importance of personalized support for individuals living with Parkinson's disease. The conversation highlights the helpline's role in providing context, resources, and...

This conversation delves into the often-overlooked topic of constipation in individuals with Parkinson's disease. We have Dr. Evans back on the show, and another friendly face, Roz Parish! The two of them talk about the prevalence of constipation as an early symptom of Parkinson's, personal experiences with managing this condition, the impact of medications, and the benefits of pelvic floor therap...

Brad was just 2 months into his Parkinson's diagnosis when he reached out to us, asking if we considered interviewing someone like him - someone who is brand new to this PD world. We have newly diagnosed stories but never anyone this new, so we asked him if he wanted to share his story. We talk about the importance of staying active, the challenges of medication management, and the emotional impac...

In this episode, Jessica and Brian talk with Samantha, the founder of the Parkinson Voice Project. They discuss the importance of speech therapy for individuals with Parkinson's, the unique challenges they face, and the significance of intentional speech. They talk about how awareness and access to resources for people with PD and caregivers are critical when it comes to commnication and therapy....

The intersection of Parkinson's disease and mental health with Dr. Taylor Rush from the Cleveland Clinic. In this episode, we explore the emotional challenges faced by individuals with Parkinson's, the role of psychology in managing these challenges, and the importance of caregiver dynamics. The conversation also delves into specific symptoms such as apathy, irritability, and hallucinations, empha...

In this episode, Nick Peters, a retired surgeon diagnosed with Young-onset Parkinson's, shares his personal experiences with Parkinson's disease (and cancer), including diagnosis, treatment options, and the impact of community support. He shares his personal experience using the new Vyalev pump, the challenges of medication management, and the importance of exercise. The conversation also touches...

Martha Carlin is back! And this time she is partnering with Lisa, a YOPD patient and President of Resolving Parkinson's. They are working on a documentary project aimed at sharing lived experience stories from patients to help shape research and treatment approaches. The discussion also highlights the need for a holistic approach to Parkinson's care, addressing not just medication but also lifesty...

In this episode of The Secret Life of Parkinson's, Diane, a therapist and Parkinson's patient, shares her journey with the disease and how it intersects with her work in mental health. The conversation explores the challenges of socialization for those with Parkinson's, the importance of community support, and coping mechanisms for managing mental health. Diane emphasizes the need for therapy and...