The Secret Life of Parkinson's

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 other kids and families going through something similar.

00:00 Introduction and Guest Welcome

02:57 Experiences with Deep Brain Stimulation Surgery

05:52 Post-Surgery Reflections and Adjustments

08:38 Understanding Parkinson's Disease and Its Progression

11:38 Navigating Life with Parkinson's as a Family

14:34 Advice for Young Caregivers and Friends

17:30 Final Thoughts and Encouragement

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 ensure that individuals' wishes are honored. LaRae provides insights on how to find a qualified elder lawyer and the importance of being prepared for unexpected life events.

00:00 Understanding Elder Law and Its Importance

03:07 The Role of Power of Attorney

06:05 Navigating Disability and Long-Term Care

08:59 Finding the Right Elder Lawyer

11:57 Planning for the Unexpected

15:06 Final Thoughts on Preparedness

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 community. But this conversation she introduced TurnTo, an AI health sidekick, that provides personalized information: clinical trials, research, podcasts, blogs - every week - all related to your personalized requests. The episode emphasizes the potential of AI to empower patients and improve their quality of life through tailored information and support.

https://www.turnto.ai/

00:00 Introduction to Turn2 AI and Its Impact

02:55 The Journey of Jessica Dove London

06:10 The Overwhelming Landscape of Parkinson's Research

09:08 Introducing Tony: The AI Health Sidekick

11:55 Personalized Insights and Patient Stories

15:06 Comparing AI Tools: Turney vs. ChatGPT

17:50 The Role of Patients in Their Own Care

21:03 Future Directions and Accessibility of AI Tools

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 storytelling in navigating the challenges of the disease. They also touch on the significance of creating a supportive hub for education and awareness around Parkinson's, aiming to inspire and connect individuals affected by the condition.

Chapters

00:00 Introduction to the Journey of Parkinson's

02:57 Personal Stories and Creative Expressions

06:08 Understanding Cinema Therapy

08:57 The Role of Storytelling in Healing

11:51 The Development of a Parkinson's Film

14:45 The Importance of Acceptance and Community

18:04 Casting and Character Development

21:05 Creating a Hub for Parkinson's Education

23:55 The Broader Impact of the Film

26:51 Final Thoughts and Future Aspirations

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 other) really is. It’s an honest conversation, filled with hope, nerves, and a lot of heart as we look ahead to what’s next.

00:00 Journey to Deep Brain Stimulation

05:06 Understanding the Procedure and Expectations

10:12 Reflections on Parkinson's Progression

16:05 Looking Ahead: New Beginnings and Optimism

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 transformative power of helping others.

Chapters

00:00 Introduction to Parkinson's Advocacy

03:08 Tim Lockard's Journey with Parkinson's

05:47 The Importance of Community and Support

08:46 Health Regimens and Coping Mechanisms

12:06 Exploring Treatment Options

14:55 The Role of Surgery in Parkinson's Treatment

17:56 Acceptance and Personal Growth

20:49 The Ripple Effect of Advocacy

23:56 Closing Thoughts and Encouragement

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 straight and I feel like I'm educating the doctor on all his 'other' ailments". Well, you are not alone.

Meet Ryan Sheedy. He is a parent to a child with a rare disease — an experience that inspired him to create Mejo, a care companion app designed to simplify and personalize care management. What started as a way to organize his own family's complex medical world has grown into a powerful tool now being offered to the Parkinson’s community. Through a new partnership with Changing Parkinson’s, caregivers in our group (U.S. only at this time) will have access to Mejo’s premium features, making it easier to track medications, doctor visits, symptoms, and more — all in one place. 

Email: [email protected] to get the special CODE for mejo

00:00 Introduction to Mejo and Caregiving

02:57 Ryan's Personal Journey and the Birth of Mejo

05:51 Mejo's Unique Features and Benefits

08:48 Practical Applications for Parkinson's Patients

12:10 Document Storage and Emergency Preparedness

14:59 Personalization and User Experience

17:50 Security, Privacy, and HIPAA Compliance

21:02 Partnership with Changing Parkinson's

24:04 Conclusion and Future Prospects

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, today. Visit www.changingparkinsons.org to learn more.

In this episode, we take you behind the scenes to share:

-How the podcast inspired us to think bigger

-The evolution from 5K for JK to a full nonprofit mission

-The real impact of community, education, and support

-Why this work is personal—and why it matters more than ever

The podcast started the conversation.

But the mission? That’s what’s changing lives.

#ChangingParkinsons #SecretLifeOfParkinsons #ParkinsonsAwareness #NonprofitImpact #PatientVoice

00:00 Introduction to the 5K for JK Event

02:55 Transitioning to Changing Parkinson's

05:49 Educational Initiatives and Community Engagement

09:00 Personal Experiences with Parkinson's Medication

11:56 The Future of Changing Parkinson's

15:13 Expanding Reach and Impact

17:57 Closing Thoughts and Call to Action

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 emotional support to patients and caregivers alike, emphasizing the need for community and connection in navigating the challenges of Parkinson's.

00:00 Introduction to the Podcast and Helpline

03:12 Understanding the Parkinson's Foundation Helpline

06:02 The Importance of Context in Helpline Support

08:55 Types of Questions and Concerns Addressed

11:55 Resources and Recommendations for Patients

15:08 Managing Expectations in Parkinson's Research

18:06 Final Thoughts and Encouragement to Reach Out

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 therapy. They also explore various tools and techniques that can aid in alleviating constipation, emphasizing the importance of understanding gut health in relation to Parkinson's. The discussion emphasizes the need for a holistic approach to health, including diet, hydration, and understanding one's body.

00:00 Introduction to Constipation and Parkinson's

03:00 Understanding the Connection Between Gut Health and Parkinson's

05:58 Personal Experiences with Constipation

08:59 Medication and Its Impact on Constipation

12:05 Pelvic Floor Therapy: A New Approach

14:49 Tools and Techniques for Managing Constipation

19:22 Understanding Electrical Impulses and Safety

20:17 Exploring Dietary Changes and Their Impact

21:29 The Importance of Fiber in Diet

22:36 Identifying Symptoms and Finding Solutions

24:47 Seeking Professional Help and Advice

25:28 The Role of Diet in Managing Constipation

28:36 The Importance of Water and Fiber

30:05 Practical Tips for Better Bowel Movements

32:11 Understanding the Microbiome and Probiotics

39:10 Personalized Approaches to Gut Health