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 support systems, coping mechanisms, humor, and the journey towards acceptance.

Chapters:

0:00 - Intro

1:00 - Parkinson's acceptance / double vision

3:00 - Depression diagnosis based on hand grip

4:45 - Empathy

6:00 - Recognizing slow/stiff movements

6:37 - Medications Neurophsych test

8:48 - Would you rather know and help yourself or not know

13:46 - Coming to the realization you have Parkinson's

15:04 - It's my parkinson's

18:00 - RBD (REM Behavior Disorder)

21:31 - Sometimes, we have to laugh at ourselves

22:37 - Being a hunter and living with Parkinson's

23:23 - Bicycling and living with Parkinson's

26:05 - The difference the gym and community make

27:20 - Surgeries with Parkinson's

29:15 - Close / Have a sense of humor

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 experience

11:42 Did your relationship change?

13:50 Inspired by mom. That's marriage

15:00 Therapy for carepartners

16:53 What I wish other adult children of PD knew

19:20 When parents with PD are open vs not open about Parkinson's

21:36 What I want my dad to know

24:00 Closure

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

15:09 Jobs and hobbies

19:08 What you wish you could tell yourself the day you were diagnosed

20:35 Diagnosis gave me an "ah-ha" moment

21:58 Parkinson's Community

23:01 Life goals

24:50 "I really needed to hear that"

26:11 Closing

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 the chance to catch up with Nate Coomer with the Parkinson's Fitness Project.

I can't stress enough how powerful it is to meet others with Parkinson's. Community is everything!

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 hobbies like drumming can serve as therapeutic outlets. John also offers valuable advice for newly diagnosed patients, encouraging them to engage with their local communities and seek out resources to navigate their journey with Parkinson's.

00:00 Introduction and Background

02:59 Living with Parkinson's: The Diagnosis Journey

05:42 The Impact of Parkinson's on Daily Life

08:29 Navigating Healthcare and Finding Specialists

11:01 Coping Mechanisms and Medication Management

13:50 The Role of Hobbies: Drumming as Therapy

16:31 Advice for New Patients and Community Engagement

19:17 Reflections on Life with Parkinson's

22:02 Conclusion and Final Thoughts

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 the diagnosis on family communication, and the significance of setting goals to maintain a fulfilling life. Throughout the episode, Darrell emphasizes the need for adaptation and resilience, encouraging listeners to focus on what they can still enjoy and achieve in life with Parkinson's.

00:00 Introduction to the Secret Life of Parkinson's Podcast

01:49 Darrell's Journey with Parkinson's and Boating Adventures

05:52 Navigating Life with Parkinson's: Challenges and Adaptations

10:01 The Impact of Support Groups on Mental Health

13:58 Communicating Parkinson's Diagnosis to Family

18:04 The Dichotomy of Parkinson's: Perspectives on Quality of Life

21:57 The Importance of Goal Setting in Living with Parkinson's

26:02 Conclusion and Final Thoughts

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 batteries

13:44 - 16:56 Feeling great after DBS (deep brain stimulation) surgery

16:57 - 18:49 Medtronic Adaptive DBS and what appointments are like with the programmer

18:50 - 20:02 Improvement on vs. off

20:03 - 22:20 Closing

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 the significance of community and resilience in living well with Parkinson's.

00:00 Introduction to Parkinson's and Personal Journey

02:57 Career in Fashion and Impact of Parkinson's

06:08 Diagnosis Journey and Initial Reactions

11:50 Living with Parkinson's: Adjustments and Realizations

15:05 The Role of Support Systems and Community

17:46 Writing 'Twitch' and Sharing the Story

23:42 Lessons Learned and Messages for the Newly Diagnosed

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 and what steps we can take to protect future generations.

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