The Secret Life of Parkinson's: Recent Episodes
Jessica Krauser
The Secret Life of Parkinson's is a podcast created by Parkinson's patients, sharing their stories and interviewing others, on things we deal with on a daily basis. It's hard for people with PD to talk to others about the disease because sometimes it's difficult for the patient themselves to describe what they are feeling. Talking to other PD patients helps us express what we are going through in ways we might not be able to express to family and friends.
One of the hardest parts of living with Parkinson's is that you don't always notice the changes happening in yourself—but the people around you often do.
In this episode, we talk about why feedback from family, friends, care partners, and even healthcare providers can be one of the most valuable tools for living well with Parkinson's. Brian shares how learning to accept outside observations has helped him recognize subtle changes, adjust medications, improve posture and movement, and stay independent.
We also discuss medication timing, exercise, community support, travel, planning for the future, and why conversations about palliative care and hospice shouldn't be feared—they're about living your best life for as long as possible.
Whether you're living with Parkinson's or supporting someone who is, this conversation offers practical insights into seeing the disease from a different perspective.
Chapters00:00 Introduction
00:27 Seeing What Others See
03:13 Everyday Strategies
07:08 Medication & Movement
09:22 Travel Tips
11:43 Independence
13:05 Planning Ahead
15:55 Closing Thoughts
Can what you eat really affect Parkinson's disease?
In this episode, we sit down with Dr. Laurie Mischley to discuss the latest research on diet, lifestyle, and Parkinson's progression. We explore why nutrition may play a bigger role than many people realize, the evidence behind common dietary recommendations, and how researchers are using new tools—from remote monitoring to innovative technology—to better understand Parkinson's over time.
Whether you're newly diagnosed or have been living with Parkinson's for years, this conversation offers practical insights and a fresh perspective on what you can do beyond medication.
Chapters
00:00 Welcome & Meet Dr. Mischley
02:00 Why Diet Matters in Parkinson's
08:30 New Ways Researchers Are Studying Parkinson's
15:30 Foods That May Influence Progression
22:30 Dairy, Processed Foods & Nutrition
29:00 B Vitamins & Brain Health
34:30 Lifestyle Beyond Medication
39:00 Small Changes That Can Make a Difference
After a Parkinson's diagnosis, something strange happens. Suddenly, your social media feeds, YouTube recommendations, news articles, podcasts, and Facebook groups are filled with Parkinson's. Some of it is incredibly helpful. Some of it is inspiring. And some of it can leave you feeling more overwhelmed than informed.
In this episode, we have an honest conversation about navigating the flood of Parkinson's information in today's digital world. We discuss how social media has transformed the Parkinson's community, the benefits and pitfalls of having endless information at our fingertips, and why it's okay to step back when the noise becomes too much.
Whether you're newly diagnosed or have been living with Parkinson's for years, this episode is a reminder that you don't have to consume everything. Finding a few trusted resources, building real connections, and focusing on what helps you can make all the difference.
Chapters:
00:00 Suddenly, All You See Is Parkinson's
01:20 What We Did After Our Diagnosis
02:18 How the Parkinson's Community Has Changed
03:44 The Problem with Misinformation
05:12 Who (and What) Should You Trust?
07:40 Information Overload Is Real
09:09 Why We Create Content the Way We Do
10:35 The Emotional Journey After Diagnosis
12:24 Advice for Anyone Newly Diagnosed
13:51 Finding Balance in a World of Constant Information
15:12 Final Thoughts & Helpful Resources
7 Things I Learned Traveling Through Europe with Parkinson's:
- Parkinson's doesn't mean you can't travel—it means you have to travel differently.
- Preparation gives you freedom.
- Exercise is medicine, especially while traveling.
- Sleep matters more than you think.
- Stress has a bigger impact on symptoms than many people realize.
- Small routines (stretching, medication timing, hydration) prevent bigger problems.
- You don't have to prove you can do everything on your own.
- Being flexible often leads to a better trip than sticking rigidly to the original plan.
Chapters:
00:00 Introduction and personal hair washing routines
01:00 Travel experiences and symptom management during vacation
02:11 Impact of stress and activity on Parkinson's symptoms
03:09 Challenges with mobility and assistance during travel
04:02 Using resistance bands to simulate walking and movement
04:56 Medication adjustments and tips, including Crexon
05:53 Sleep aids and improving sleep quality with masks
07:04 Preparing for upcoming travel and DBS considerations
08:04 The importance of exercise and stretching routines
09:03 Managing medication timing and adherence
10:01 Speech and freezing of gait issues
10:51 Sleep masks and their benefits during travel
12:09 Final tips for travel preparation and self-care
"We're naming everything and explaining nothing," Martha Carlin
Get ready for some science!! But in a good way! A 4th time guest, Martha Carlin, caregiver to her husband John with Parkinson's (for over 20 years) who has since passed, still has the drive, passion and determination to figure out this disease...for John, his friends/community, the caregivers...for us. She continues to look and think outside the box.
Chapters:
00:00 Why Parkinson's may be bigger than dopamine
02:28 The diagnosis that changed Martha's life
05:12 What scientists still don't understand about Parkinson's
08:20 The gut-brain connection explained
11:45 What is the glycocalyx and why does it matter?
15:15 Environmental factors and interconnected systems
18:25 Why personalized medicine may change Parkinson's care
21:10 What gives Martha hope about the future
I'm getting ready for a family trip to Europe and, like many people with Parkinson's, packing looks a little different for me. From medications to my DBS charger and backup plans, here's a real, unfiltered look at what comes with me when I travel internationally.
David Loud spent more than two decades conducting some of Broadway's biggest productions when Parkinson's began affecting the very abilities his career depended on.
In this episode, David shares the early signs he couldn't ignore, the emotional toll of hiding his diagnosis, and why "coming out" with Parkinson's was one of the hardest things he's ever done. He also talks about reinventing himself through teaching, writing his memoir Facing the Music, and finding purpose in unexpected places.
Whether you're newly diagnosed or years into your journey, David's story is a reminder that Parkinson's may change your path, but it doesn't have to define your future.
00:00 A Life on Broadway
01:53 When Parkinson's Entered the Picture
03:46 The Hardest Part: Hiding the Disease
06:07 Letting Go and Moving Forward
09:48 What 19 Years with Parkinson's Has Taught Me
12:15 Why I Wrote Facing the Music
17:00 What I'd Tell Someone Newly Diagnosed
20:29 Words of Hope
Why do two people with Parkinson's experience the disease so differently?
In this episode, we sit down with researchers Patrik Verstreken and Natalie Kaempf to explore groundbreaking work that may help answer that question. Using advanced biology, biomarkers, and artificial intelligence, their team has identified what could be five distinct biological subtypes of Parkinson's disease.
We discuss what these findings mean for people living with Parkinson's today, how genetics and environmental factors may influence disease progression, and why understanding the biology behind Parkinson's could lead to more personalized treatments, better clinical trials, and earlier diagnosis in the future.
Chapters
00:00 Introduction to Parkinson's Disease Research
02:54 Understanding the Variability of Parkinson's Disease
06:07 Symptomatic Treatments vs. Underlying Causes
08:57 Subtypes of Parkinson's Disease
11:51 The Role of Biomarkers in Early Diagnosis
14:46 AI's Impact on Parkinson's Research
18:10 Clinical Trials and Treatment Stratification
20:59 Future Directions in Parkinson's Disease Treatment
23:55 The Importance of Community and Hope
In this episode, we explore the inspiring work of Pass to Pass, an organization that empowers people with Parkinson's through outdoor hiking adventures. Learn about trip planning, safety, gear, and how outdoor activities can boost confidence and well-being. So excited about these adventures!!!
This BONUS episode highlights my time at WPC 2026 at the Comfort Linen booth!
Last year, episode #108, we had Nancy McGovern on the podcast, and this year, I was able to meet her in person at the World Parkinson's Congress 2026!
She is the creator of Comfort Linen, sheets and pajamas that are designed to allow you to move easier and more freely without getting stuck, as most people with Parkinson's do. I started using her sheets and pajamas before the interview last year and I still sing her praises today!
Some may say they are too expensive, but we spend a lot of our time in our beds, not sleeping well. Wouldn't you pay just a $1 a day to get a good night sleep? Or at least a solid 5 hours? I did.
Jessica and Melissa had the opportunity to visit and explore the Kirk Gibson innovative Parkinson's wellness center and we had share our experience. Brian then shares his experience at a PD conference he spoke at in New York! Great updates to learn what's going on in other areas.
Chapters
00:00 Introduction to the Secret Life of Parkinson's
00:57 Exploring the Kirk Gibson Center for Parkinson's Wellness
04:31 Presenting at the Parkinson's Symposium
06:51 Encouraging Community Engagement and Support
A quick note before we start. This episode isn't about a gambling problem or a shopping problem. It's about a known side effect of certain Parkinson's medications that can change behavior in ways people don't always recognize while it's happening. Our guest, and avid listner to the podcast, Robert, was brave enough to share his story because he hopes it helps someone else spot the signs sooner than he did.
Takeaways
- Medication side effects can lead to compulsive behaviors
- Oversight and awareness are crucial when taking medication for Parkinson's
Chapters
- 00:00 - Introduction to medication side effects and personal stories
- 02:00 - The significance of oversight and monitoring impulsive behaviors
- 05:00 - Recognizing signs of compulsive gambling, shopping, and working
- 08:00 - Personal journey: panic attack and the impact on life
- 12:00 - The role of questionnaires like QWIP in identifying risks
- 15:00 - How trauma and stress influence Parkinson's symptoms
- 18:00 - Practical advice for family and caregivers 20:00 - The importance of open communication with healthcare providers
- 22:00 - Lessons learned and hope for the community
- 24:00 - Final thoughts: empowerment and vigilance
This inspiring interview features Nancy, a passionate cyclist living with Parkinson's, sharing her journey of resilience, the importance of exercise, and how biking helps manage her symptoms. Discover practical tips, motivational stories, and insights on staying active with Parkinson's.
Chapters
00:00 Introduction to Nancy's Journey with Parkinson's
03:01 Biking Accidents and Resilience
05:48 The Impact of Exercise on Parkinson's
08:46 Community and Support in Biking
12:09 Living Life Fully with Parkinson's
We are so excited to introduce Nicole, Brian's other half! During this interview, we talk to Nicole about dating someone who already has a Parkinson's diagnosis, but we also talk about her professional experience as a nurse and her work with patients that come in with Parkinson's.
This episode explores the misconceptions and practical steps for legal and financial planning after a Parkinson's diagnosis. The discussion features Jim Allen, a retired law employment attorney and living with Parkinson's, shares insights on timing, decision-making, and managing estate planning in the context of a progressive disease.
Chapters:
00:00 Introduction to Parkinson's and Legal Affairs
06:06 Navigating Legal Decisions After Diagnosis
12:11 Financial Planning and Estate Management
17:58 Understanding Wills, Trusts, and Probate
24:02 Final Thoughts on Planning and Peace of Mind
Chapters
00:00 Introduction and Guest Background
01:24 Peter’s Diagnosis Journey
03:50 Initial Reactions and Diagnosis Relief
05:17 Medication Regimen and Challenges
07:10 Writing as Therapy and Creative Outlets
08:38 Impact of Parkinson’s on Hobbies and Lifestyle
10:27 Considering Deep Brain Stimulation (DBS)
12:19 Communication Challenges and Support
14:14 Experiences with Anxiety and Support Moments
16:38 Support Systems and Family Importance
19:30 Reflections on Identity and Purpose
22:23 Managing Travel and Daily Activities
24:16 Advice for Newly Diagnosed Patients
25:39 Stubbornness, Acceptance, and Moving Forward
26:39 Closing Remarks and Encouragement
In this episode, Dr. Jud Millhon, a cardiologist turned advocate for blood flow technology known as Beemer. We dive deep into how improving microcirculation could support management your overall health.
Chapters:
00:00 - Introducing the episode: The link between blood flow, Parkinson's, and wellness
02:00 - Dr. Jud Millhon’s background in cardiology and his personal health journey
04:00 - How Beamer technology works and its effects on blood flow
06:00 - The importance of microcirculation and aging-related changes
07:30 - Common symptoms related to circulation issues, such as neuropathy
09:00 - Demonstrating microcirculatory blood flow improvements with Beamer
10:50 - The lasting effects of Beamer use and optimal frequency
12:00 - Worldwide adoption and hospital integration of blood flow technology
13:00 - Contraindications and safety considerations
14:00 - Specific relevance for Parkinson’s: inflammation and blood flow support
15:00 - Personal benefits from consistent use and lifestyle integration
16:00 - Future prospects: clinical research and regulatory pathways
17:00 - Encouragement to explore Beamer as part of an overall healthy lifestyle
18:00 - Closing thoughts: Hope, community, and proactive health management
In this episode, we revisit important insights on managing Parkinson's while working, including legal rights, disclosure timing, and workplace accommodations, with expert Jim Allen. We explore practical advice for navigating employment challenges and maintaining independence.
Chapters
00:00 Introduction and Guest Background
01:21 Previous Episode Recap and Key Topics
02:50 Medication and Symptom Management
03:19 Jim's Career and Expertise in Disability Law
05:13 Importance of Employer Communication
07:12 Who to Inform About Parkinson's at Work
08:40 Cognitive Symptoms and Workplace Challenges
09:38 Retirement and Cognitive Decline
10:08 Documenting Conversations with Employers
11:06 What to Disclose and When
12:06 Legal Aspects of Discrimination and Layoffs
13:56 Legal Standards for Disability Claims
16:25 Employee Rights and Reasonable Accommodations
17:21 When to Disclose Symptoms in New Jobs
18:48 Handling Personal Limitations and Employer Expectations
20:14 Sharing Personal Experiences and Advocacy
22:06 FMLA and Medical Leave Options
24:00 Napping and Breaks as Accommodations
25:26 Managing Work Schedule Flexibility
27:23 Resources for Employers and Employees
28:50 Legal and Practical Tips for Disclosure
29:47 Summary and Final Advice
YOU HAVE TO LISTEN UNTIL THE END! SO FUNNY!!!
This interview explores the innovative intersection of art, neuroscience, and Parkinson's disease, featuring Kristin Norderval’s journey as a musician diagnosed with Parkinson's and her pioneering work on vocal and gestural research. Discover how music and movement can aid in understanding and managing Parkinson's symptoms.
Chapters
00:00 Introduction to Kristin Norderval and Her Journey
02:48 The Intersection of Music and Parkinson's
06:02 Researching the Neurology of Singing
08:37 The Role of Singing in Parkinson's Therapy
11:47 Exploring Vocal Exercises and Their Benefits
14:36 The Impact of NeuroArts and Collaboration
17:52 Innovative Tools for Vocal Improvisation
20:45 Personal Experiences with Parkinson's and Music
23:29 Future Aspirations and Research Goals
26:41 Conclusion and Final Thoughts
Did you hear? Syngenta is stopping paraquat production! Here’s why this matters for the Parkinson’s community.
In our latest episode, we discuss a major shift in Parkinson’s advocacy. With Syngenta halting paraquat production, we have a chance to reshape policies affecting our loved ones.
George and Margaret, advocates who lost parents to Parkinson’s, share their journey. They’re not just talking the talk; they’re pushing for real change. Their new podcast dives deep into advocacy and the importance of community involvement.
We can’t just stop here. It’s time to get involved, educate our lawmakers, and advocate for everyone battling Parkinson’s.
This episode features Gary Gosselin sharing his inspiring journey with Parkinson's disease, the significance of perseverance and intent, and how his wristband initiative fosters community and hope among those affected.
Chapters
00:00 Introduction and Guest Introduction
00:59 Gary's Diagnosis Journey and Initial Steps
02:53 The Role of Self-Advocacy and Specialist Care
04:48 The Inspiration Behind the Resolve Band
07:10 Defining Perseverance and Intent
09:02 Creating and Distributing the Wristbands
10:57 Community Impact and Support Groups
12:48 Sharing the Message at Conferences and Events
14:45 The Power of Mindset and Hope
17:07 Expanding the Initiative: Spanish Version and Outreach
19:02 Reflections on Advocacy and Impact
20:58 Future Goals and Final Thoughts
This interview with Dean Dahl explores the early stages of Parkinson's diagnosis, the emotional impact, and strategies for living proactively with the disease. Dean shares his personal journey, insights on medication, support systems, and the importance of community and self-care.
Chapters
00:00 Introduction to Parkinson's and Personal Stories
02:48 Recognizing Symptoms and Initial Diagnosis
06:12 Understanding Parkinson's: A Caregiver's Perspective
09:02 Living with Parkinson's: Adjustments and Realizations
11:46 The Role of Family and Support Systems
15:04 Navigating Medication and Treatment Options
17:45 Emotional Challenges and Coping Mechanisms
20:38 Finding Community and Support Groups
23:59 Living in the Moment and Embracing Life
26:51 Exercise and Its Importance in Managing Parkinson's
29:36 Conclusion and Final Thoughts
Taryn Rapp shares her personal journey with genetic testing related to Parkinson's disease, discussing her father's diagnosis and her participation in the PPMI study. The conversation explores the importance of genetic testing, the process involved, and the impact on family dynamics. Taryn emphasizes the value of knowledge and participation in research to help advance understanding and treatment of Parkinson's disease.
Chapters
00:00 Introduction to Genetic Testing and Parkinson's
02:52 Taryn's Personal Journey with Genetic Testing
06:11 Understanding the PPMI Study and Its Importance
09:00 Family Dynamics and Genetic Testing
11:48 The Process and Experience of Genetic Testing
15:06 Future of Parkinson's Research and Participation
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
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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!
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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
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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
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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
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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
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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.
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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
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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
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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
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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
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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
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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
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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: info@changingparkinsons.org 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
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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
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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
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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
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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 impact of the disease. The conversation emphasizes the need for community support, the unpredictability of symptoms, and the significance of mental health and stress management in living with Parkinson's.
00:00 Introduction to the Journey of Parkinson's
03:00 Personal Experiences with Symptoms
05:50 Navigating Diagnosis and Treatment
09:04 Emotional Roller Coaster of Diagnosis
11:56 Coming Out and Community Support
14:46 Living with Parkinson's: Daily Challenges
18:05 The Importance of Exercise and Socialization
29:07 Embracing the Journey with Parkinson's
30:24 Lessons from Early Diagnosis
32:07 Living with Parkinson's: Progress and Adaptation
33:27 Coping with Cycles of Symptoms
35:00 The Importance of Sleep and Rest
36:39 Navigating Medication Changes
39:21 Finding Community and Support
41:16 Creating Connections in Isolation
43:40 Facing Uncertainty and Planning Ahead
46:31 Cognitive Concerns and Mental Health
48:34 Stress Management and Its Impact
51:54 Encouragement and Moving Forward
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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.
00:00 Introduction to Parkinson Voice Project
01:01 The Journey of Speech Therapy for Parkinson's
10:10 Understanding Speech Challenges in Parkinson's
18:02 The Importance of Intent in Speech Therapy
23:56 Accessing Speech Therapy and Resources
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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, emphasizing the need for connection and support in navigating the complexities of living with Parkinson's.
Chapters
00:00 Introduction to Parkinson's and Mental Health
01:04 The Role of Psychology in Movement Disorders
03:45 Understanding Triggers and Symptoms
06:02 Addressing Apathy and Irritability
09:20 Navigating Caregiver Dynamics
12:00 Managing Hallucinations and Psychosis
18:45 The Importance of Connection and Support
27:11 Mental Health Challenges in Parkinson's
34:37 Conclusion and Call to Action
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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 on future considerations such as Deep Brain Stimulation (DBS) and the ongoing journey of living with Parkinson's.
00:00 Introduction to Parkinson's and Personal Experiences
02:58 Diagnosis Journey and Initial Reactions
06:08 Living with Parkinson's: Treatment and Challenges
08:58 Innovative Treatments: The Vial of Pump
11:55 The Impact of Exercise and Community Support
14:57 Reflections on Medication and Side Effects
17:58 Future Considerations: DBS and Ongoing Management
20:55 Conclusion and Final Thoughts
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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 lifestyle factors such as stress management and gut health.
00:00 The Importance of Patient Voices in Parkinson's Advocacy
09:59 Creating a New Paradigm for Parkinson's Care
19:51 Documentary Project: Sharing Lived Experiences
29:46 Innovative Approaches to Parkinson's Treatment
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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 the value of connecting with others who understand the struggles of living with Parkinson's.
00:00 Introduction to Parkinson's and Mental Health
03:10 Diane's Journey with Parkinson's
05:54 The Intersection of Therapy and Parkinson's
09:01 Socialization and Community Support
12:00 Coping Mechanisms and Mental Health
15:12 Navigating Medication and Treatment
17:57 Addressing Night Terrors and Hallucinations
20:44 Conclusion and Encouragement for Seeking Help
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In this conversation, Katherine shares her journey as a caregiver for her husband with Parkinson's disease. She emphasizes the importance of advocacy, navigating the healthcare system, and the adjustments required in caregiving. The discussion also touches on the impact of Parkinson's on relationships and the significance of teamwork in caregiving. Katherine's insights as a certified patient advocate provide valuable guidance for both caregivers and patients.
00:00 Introduction to Caregiving and Parkinson's
02:05 Katherine's Journey into Caregiving
04:00 The Diagnosis Experience
07:03 Understanding Parkinson's Symptoms
10:02 The Role of Caregivers
12:58 Support Groups and Community Learning
16:01 The Importance of Medication and Exercise
19:00 Advocacy and Patient Rights
21:50 Navigating the Healthcare System as a Caregiver
24:57 Adjusting to Life with Parkinson's
27:50 The Impact of Parkinson's on Relationships
30:14 Becoming a Certified Patient Advocate
33:09 Working Together as a Team in Caregiving
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00:00 Introduction and Personal Stories
02:58 Diagnosis Journeys and Experiences
06:06 Living with Parkinson's: Acceptance and Medication
09:02 The Role of Exercise and Community
12:06 Socialization and Support in the Gym
14:59 Encouragement for New Diagnoses
17:56 Future Aspirations and Activities
21:02 Navigating Daily Life with Parkinson's
23:46 Conclusion and Final Thoughts
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Oh DBS...why is it so hard to decide.
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0:00 Introduction
2:06 Jess's Neuropsychological test experience
3:46 The influence of stress on cognitive function
5:55 How does the doctor define stress
8:04 Recommendations when you do experience stress
9:47 Depression can mimic Dementia
11:55 Neurophsycology looks at the functioning of the brain
13:58 How Neuropsycology is different from other disciplines that look at cognitive functioning
15:20 Helps to have a baseline test
16:55 Applying for disability due to brain function
19:58 Normal aging or Parkinson's
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00:00 Welcome Warren Hanna
02:10 Experiences for a new YOPD patient
04:51 Reaction from family
06:50 It doesn't progress overnight
07:17 How did you know
10:25 What regimen did you choose to start
21:33 Prioritizing exercise
24:16 Control the controllables
25:03 How Baseball training has helped
30:10 Becoming an advocate
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00:54 Police officer diagnosed with Parkinson's in 2020
02:17 Connecting the dots between exposed chemicals to PD
03:34 Putting yourself in danger and you don't even know it
06:38 More awareness needs to be done around police and fireman
08:00 Accepting Parkinson's while bringing awareness to the potential reason
10:17 What changes can be made?
17:17 What if you ever got pulled over by a cop?
18:05 PULL-OVER Pal - https://www.facebook.com/pulloverpal/
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This episode is about sex. You will hear the words: Erectile dysfunction, orgasm, libido, sex tools/toys and more. If this isn't for you, please don't watch. This episode is for people with PD who have asked the question about sex with PD. While Brian and I might look uncomfortable, I've just been really dyskinetic but also uncomfortable. But it was a GREAT interview!
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"I'm a believer!" That was a statement we heard over and over from our friends at PDNextSteps about the Beech Band after they wore it, walked around, smiled, moved more freely and spoke a little clearer. Carl himself has said that this innovation - this simple band - was a gift from God to bring back his speech. As a Christian myself, I truly believe that. We were able to witness first-hand how the Beech Band made an impact on people's lives.
This is not a cure. It doesn't take take away your Parkinson's symptoms for good. It's just another tool in our toolbox that could potentially help people with Parkinson's manage their symptoms for a short time, specifically freezing of gait, speech issues, tension, and essential tremors. Some said, they felt, relaxed and more fluid with their movements.
The Beech Band just went into production January 2025 in the UK and are already sold out. They are working on producing more but they are also making it available as an app if you have a smart watch (android phones) and Apple watch (coming soon). Watch the video for more details.
You can learn more at www.beechband.com
We are not getting paid to share or promote this product. Our channel is all about sharing what we learn and putting it out there for others to see.
parkinsons #parkinsonsawareness #beechband #carlbeech #neurodegenerativedisease #yopd
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Not everyone has a live-in carepartner. People dealing with Parkinson's could be young, old, male, female, living solo or living with someone. See how Brian manages living alone, and listen to the questions he asks me about checking in on my caregivers. This is a good one...
0:00 Intro
3:15 Living solo you do things for yourself
4:06 Living with PD, do you have stress, putting stress on your carepartner?
5:10 Are we asking or checking in our CarePartners how they are dealing with our PD?
7:24 Are you embarrassed by your symptoms in public?
8:41 Do we talk about our Parkinson's too much?
10:33 Does Parkinson's consume you?
11:57 Having an outlet - a PD community
13:03 There needs to be a PD training class - how to live with PD
15:03 Being your own CarePartner
15:54 All Parkinson's patients need a Tesla, Mr. Musk ;)
16:49 Do you think of long-term care or disability options?
18:10 Seeing the progression
20:29: Last 30 seconds
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0:00 - Intro
1:02 - can you dance?
2:09 - Would you do a dance class?
2:57 - What does dance help with?
3:44 - Laugh together
4:04 - Dance is spiritual
5:03 - Dance classes in U.S.
5:58 - What does dance help with
7:19 - Jess took an adult dance class
9:15: Parkinson's Prom idea
10:50 - New year, new you
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Making the decision to have DBS surgery is not easy. But I didn't think it would be for the reason I discuss.
parkinsons #podcast #deepbrainstimulation #dbs #yopd #parkinsonssymptoms #thesecretlifeofpd #movementdisorder #pd
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Meet Carl Beech. After you watch this epside, you will remember his name, I promise you! There's not much I can really even say or explain - just trust me, you have to watch this episode!!!
Check out more on:
https://www.facebook.com/profile.php?id=61563836532593
https://www.parkinsons.org.uk/news/were-investing-beech-band-wearable-device-aims-manage-parkinsons-symptoms
parkinsons #parkinsonssymptoms #parkinsonsawareness #beechband #carlbeech #spotlightYOPD #yopd #parkinsonsdiseasesupport #innovations
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Just a mix of different topics:
Shoes, PDNextSteps program, Parkinson's expenses, future episodes, and other random things.
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Brian started experimenting with dry needling for his back and shoulder issues so we thought we would discuss his experience with his PT!
0:00-1:04 Dry Needling
1:05-2:58 Brian's PT Ryan
2:59-3:51 What is dry needling?
3:52-6:24 Where to focus dry needling
6:25-7:53 Dry needling vs. acupuncture
7:54-8:59 Brian's experience
9:00-10:11 Dry needling for Dystonia
10:12-11:47 What is cupping?
11:48-12:54 Cupping vs. needling
12:55-14:52 Things to take into consideration
14:53-18:58 How long do the needles stay in?
18:59-22:31 Who should consider dry needling?
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In this episode, we meet Amy Lavalee, who is a young-onset Parkinson's patient. She shares her personal story and then talks about her work with the Brian Grant Foundation. Check it out!
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One of the biggest Parkinson's advocates I know is George Ackerman. George's mom, Sharon, was living with Parkinson's for years before anyone ever knew. The last 4 years of her life, George was his mother's caretaker and learned more about the world of Parkinson's than he ever anticipated. Since her passing, he has has been dedicated to driving advocacy to find a cure.
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WOW, WOW, WOW! What a weekend! Our Parkinson's non-profit, the 5KforJK, had our 4th annual walking event this past weekend (September 15, 2024) in Columbus, OH. Erika came from Florida (for the 3rd time) and Jill came to Ohio for her 1st 5KforJK (and her first time to Ohio) all the way from Washington State! Straight from Erika and Jill - "community is everything...meeting other PD people is life changing."
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If you are into learning more about the gut, check out this episode. We brought Martha Carlin back to talk about more research she is doing on the GUT! This time, she's researching the effects of body temperature and Parkinson's. It's still in the works, but man is it interesting to hear her talk about. While I may not understand all the scientific terms, I learn and understand what I need to from Martha!
Please remember, always talk to your physician and medical team before making any changes. We are not doctors!
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This was a new term to me, but I know a lot of others are probably aware. But take a minute to listen to Dr. Patel discuss sundowning and how a carepartner or family member can help.
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If you are on Instagram and have PD, you probably have seen, "imstillallie". Brian and I had the opportunity and priviledge to interview Allie Signorelli, a Young-onset PD powerhouse. Her career background happens to be in the non-profit space - doing events and fundraising for Alzheimer's. Even though she worked in the Neurodegenerative space as an advocate/event coordinator for years, she never expected to be a part of such a community. Allie was diagnosed with Young Onset Parkinson's - check out her story and the courageous work she is doing for the Parkinson's community! We appreciate all advocates! Thanks for your dedication. Hats off to Allie!
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Don't forget, you can also check out our video podcast on YouTube: https://www.youtube.com/@thesecretlifeofparkinsons
Meet my daughter, Kate Krauser, as she brings honesty and humor to life with a Parkinson's mom...and advocate.
My twins were just 9 years old when I was diagnosed. Long before I was diagnosed though, Kate, at the age of 7 and 8, was already "caring" for me and my symptoms. She would massage my leg and foot due to the rigidity and hold my \hand when it would shake. A few months after my diagnosis, I talked to my kids about it - I gave it a name because they already witnessed the symptoms.
Since my journey began, I have been very focused on showing my kids that in life, "It's not what happens to you, but how you react to it that matters". I try my best by watching how much I complain, showing them I can laugh at myself, exercising often, bringing humor to some of my symptoms, and doing things for others.
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We have my daughter Kate for one last episode! She joined me at the gym earlier this month and boy was she exhausted! this episode, we talk about the benefits of going to a gym and how to overcome challenges and barriers we put in front of exercising. Apathy and fatigue in PD patient definitely play a big part, so listen to some of the ways we overcome those barriers.
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Even though most people tell you "Don't google Parkinson's" after you're diagnosed, it's hard not to. So when we do, we are filtering through a sea of resources. Great resources, might I add! But sometimes I have a specific question that doesn't require a call to the doctor, or I'm finally ready to look into clinical trials, or I want to read about all the possible options that are available to me and how it has or has not helped others living with Parkinonson's. But there's nothing out there today that "houses" all of the great available resources. Until now!
Jessica Dove London created TurnTo, a FREE mobile app that curates daily Parkinson's content, helping you stay effortlessly informed.
-
Want to see if anyone else has shoulder pain and if so, how did they treat it?
-
Want to learn what diets have worked best for people with PD?
-
Want to see the most popular PD exercises?
4, Want to find a PD podcast that's right for you?
DONE!
TurnTo is your ultimate online resource for Parkinson's. Created by and for the Parkinson's community.
But to go LIVE, we need to know people out there want it! We need 500 more people to sign up on the waitlist. Just your name and email address. Simple!
Sign up for the waitlist today! https://waitlist.turnto.ai/parkinsons
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Dr. Benjamin Walter joined us from the Cleveland Clinic to talk about a very important initiative that he has been working on: when in the hospital, people with Parkinson's should be able to receive their medications at their specific times and that the staff and pharmacy are notified what drugs NOT to administer. I can't thank Dr. Walter and The Parkinson's Foundation enough for putting so much into this very critical project. As Brian said, I was "geeking" out!
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If you're living with Parkinson's and have trouble sleeping like I do, I have a solution for you: bed sheets that make moving around EASY! A few months back, Melissa recommended these sheets to our group. After realizing I was getting 'stuck' when tossing and turning at night, I decided to give them a try—along with their pajama set. Tune in to the podcast to hear my review and learn more from the founder and CEO who joined us for an insightful conversation.
Visit: https://comfortlinen.com/
Enter code: 5KFORJK at coupon for 15% discount!
I posted episode #106 on YouTube only, to talk about my pain that I think is related to PD regardless of what others say. So many people responded/commented that we wanted to share more.
Check out this episode with one of my first PD friends, Major, as he talks about his experience with Duopa! He and his wife share how it has changed his on/off times and how they time their meals. You can read about more patient stories who are on Duopa here: https://www.duopa.com/patient-stories
ATTENTION all ladies with Parkinson's! This is an episode you don't want to miss! (Sorry guys, you can watch if you want but it's a whole episode about menstrual cycles, hormones, menopause and more ;)! Richelle is a young-onset woman with Parkinson's. She co-founded the Women's Parkinson's Project and the My Moves Matter app. She is working with many women and doctors in the Parkinson's community to understand how/when our symptoms change based on our hormones. Truly a podcast you don't want to miss!
https://www.mymovesmatter.com
Dr. Patel is back sharing the details of SIBO (Small intestinal bacterial overgrowth) and Parkinson’s when they occur together. Changes in muscle movements are common throughout many parts of the body for people with PD, including the GI tract. SIBO is often the result of food and liquids moving too slowly through the small intestines.
In this episode, we invited Larry Gifford to the show! What an inspiration he is! Larry was diagnosed with Parkinson's in 2017 and since then, he launched his own podcast, "When Life Gives You Parkinson's", co-founded PD Avengers, on the MJFF Patient Council, and is now hosting the podcast for the Brian Grand Foundation, "On Time"....among many other advocate-like things. He talks about his recent DBS, his advocacy work and ways others can get involved. Thanks, Larry!
In this episode, we bring back Dave Kolbe from Episode #11. Dave has had Parkinson's for 9+ years and is still living his best life! Hear the advice and tips he has to those of us who are newly diagnosed (or those who are years in!).
It's been over 2 years since we launched, "The Secret Life of Parkinson's". We recorded our 100th episode and are excited to share our top 5 most viewed episodes and the episodes the four of us learned the most from. Check it out!
Thanks for viewing and following our journey! We are so grateful for all the viewers and appreciate all the comments. Keep them coming!
Check out our latest interview with Dr. Patel where we talk about MDS's approach to medication with their patients, their reaction to taking or not taking medications, and much more!
In this episode, hear the love story of Allie and Steven. You may recognize them from #LitWithin or #InLoveWithParkinsons. While they lived over a thousand miles apart, Steven found Allie's blog, LitWithin, reached out to her, and the rest is history. Both living with Parkinson's, they met, fell in love, got married, and just recently, got DBS together - on the same day! Inspiring story you don't want to miss!
I've been waiting all week to share this video! For those who watched my "live" video about elbow/shoulder issues, this is a MUST SEE! I never had a reason to go to a Physical Therapist, but my MDS recommended it when medication wasn't fully helping the pain. The results...let's just say I'm a believer in PT! I'm not a doctor, and I know everyone experiences different symptoms, but I highly recommend using all the tools that your doctor provides you! Check out why.
While socializing may not directly increase dopamine levels in Parkinson's patients in the same way that medication or deep brain stimulation does, the positive experiences associated with social interaction can indirectly contribute to dopamine release and have beneficial effects on symptom management and overall well-being. Therefore, go on that girls trip or boys trip! Take the family on a weekend getaway or staycation. Don't isolate - continue to foster social connections and maintain an active social life.
In this informative episode, we learn from Martha Carlin all about poop (yes, poop), our gut, and it's relation to Parkinson's disease. Martha has been researching gut health since her husband was diagnosed with Parkinson's 20 years ago. Inspired by groundbreaking research from Dr. Filip Scheperjans in 2014, Martha founded The BioCollective, a research company focused on mapping health, and then later created BiotiQuest probiotics. The amount we learned in this short segment is amazing! Tune in today!
Tune in to hear our friend, Thalia, talk about her journey to Parkinson's. She went in for a heart transplant which she believes may have triggered the onset of Parkinson's. This disease is a complex neurodegenerative disorder with multifactoral causes, and not everyone who experiences trauma or surgery will develop Parkinson's as a result. But there is some evidence that suggests if you are already predisposed to the condition due to genetic or other factors, that the onset is possible after such events.
In this episode, we talk about Jessica's approach to her new Parkinson's symptom (shoulder and elbow pain/tension) and tips on how Brian can exercise his masked face. We cover a few other random topics...not sure why, but this episode just made us laugh. Always good when have fun with your PD friends ;)
Download ebook: https://www.parkinson.org/library/books/hospital-action-plan
Order the book: https://www.parkinson.org/resources-support/pd-library/order-publications
If you have not ordered or downloaded this book from the Parkinson's Foundation, I suggest you do it today! It is filled with great information. Easy to read! There are pages you are supposed to tear out to bring with you. At some point, we will all go to the hospital for some reason - Parkinson's related or not. But living with Parkinson's, we always have to be prepared. Check this out today! Nice work Parkinson's Foundation!
No one plans on falling but when you are living with Parkinson's, there is a high likelihood that falling may occur due to the disease, or just a normal trip on the curb. Either way, there are things you can learn about and things you can practice today to be prepared if and when a fall occurs.
In this episode, we discuss symptom changes. Every Parkinson's patient is different: their symptoms, disease progression, response to medications...everything. It's always good to keep a journal and document any symptoms, whether they come and go or come and are here to stay.
In this episode, we talk about our experiences with a "frozen shoulder" or pain in your shoulder. Rigidity, tension, and stiffness. Medication and continuing to exercise/move my arm has helped alleviate some of the stiffness at the moment. Do you suffer from pain in your shoulder?
In this episode, we talk with Lisa who is a person living with Parkinson's and has found painting as her therapy. She never painted before, but after living with Parkinson's for 10 years, she decided to give it a try and now she's hooked. According to the APDA, "Art therapy may also be a tool that enhances the lives of people with PD more generally. One small study investigated clay art in people with PD and showed improvements in hand dexterity, mood, and quality of life."
What kind of art have you tried?
https://www.apdaparkinson.org/article/art-therapy-parkinsons-disease/#:~:text=Art%20and%20PD%3A%20Beyond%20the,mood%2C%20and%20quality%20of%20life.
This interview is longer than most, but for good reason. My good friend, Leah Dennis, shares her personal journey of what it was like witnessing her mother (diagnosed with Parkinson's in 2016) experience Parkinson's psychosis, only they didn't realize it was PD psychosis right away. In this video, Leah touches on "red flags" and warning signs that every care partner and patient should pay attention to. This is an episode you don't want to miss.
In this episode, Brian speaks very candidly about his recent work situation. Due to a reduction in workforce with his previous employer, Brian was laid off and is now searching for a new job. Like anyone, searching for a job can be stressful. But add Parkinson's to the mix, as well as being a single dad like Brian. Check out this video to see how he's handling these changes.
In this episode, we are just scratching the surface with the topic of falling. Parkinson's or not, more than 1 in 4 people over the age of 65 fall each year. That number doubles if you are living with Parkinson's. Melissa introduces us to a few basic things to check into first, but as you can imagine, exercise is going to be a big part of this conversation!
In this episode, Roz gives us an update on her DBS journey. We always hear the success stories, and while hers is still a success, she's encountered a few bumps along the way. Listen to her current struggles and how she's working to overcome them.
In this episode, Dr. Patel describes the difference between the 5 Neurodenerative Parkinsonisms: Parkinson's Disease, Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), and Lewey Body Dementia (which is discussed in Part 2).
We take a quick break and come back on with Dr. Patel to talk about Lewey Body Dementia further and how it's different from Parkinson's Dementia and Alzheimer's. Great episode that everyone should hear!
For those living outside of Ohio, Cheryl Krueger is a well-known entrepreneur in Columbus and is referred to as the 'Cookie Queen'. (Order her cookies and you'll quickly find out why: https://ckruegers.com/)
She was diagnosed with Parkinson's 10 years ago, has faced, and continues to face, many daily challenges with walking, balance, and hallucinations. She has an incredible outlook on life and a sense of humor about her hallucinations. You don't want to miss this episode!
Join us for an exclusive interview with a Parkinson's Disease (PD) patient living in Canada who underwent Deep Brain Stimulation (DBS) surgery. Our guest shares her personal experiences and unique insights into the DBS process, shedding light on how it differs between Canada and the United States.
Blake Bookstaff, young-onset patient and author of: “You have young-onset Parkinson’s disease” joins us to talk about his journey with Parkinson’s and what he hopes his book will accomplish. P.S. his book is relevant for all ages of Parkinson’s patients.
As you saw in Episode #74 with Chris Jones, we discussed the National Plan to End Parkinson's Act. In this episode, we interview Fred Piccolo, a young-onset Parkinson's Patient AND the Director of Special Projects for Congressman, Gus Bilirakas, also working on this National Plan. His personal story and hope that is inspiring. By passing this bill in Congress, he believes we could see a cure in our lifetime.
In this riveting episode, we sit down with Chris Jones, a dedicated staffer working alongside Gus Bilirakas, to dive deep into the National Plan to End Parkinson's Act. Chris shares his firsthand insights, shedding light on the act's significance and the path forward. If you're passionate about making a difference and eradicating Parkinson's disease, this conversation is a must-listen. Join us in advocating for change as we discuss the importance of reaching out to your state representative to ensure the passage of this crucial act. Tune in now and become a part of the movement that aims to change lives for the better.
Daniel Corcos, Ph.D. at Northwestern University, is running the first randomized control trial designed to investigate the effects of moderate- and high-intensity aerobic exercise on disease progression in untreated patients with Parkinson’s, called SPARX3. Listen as Dr. Corcos explains how aerobic exercise is a vital treatment for people living with Parkinson's.
In this episode, Gene who is 75 and living with Parkinson's for 4 years, we learn that he is no stranger to surgeries. However, his most recent experience has his family speaking up about what they wish they knew or wish they would have done prior to this surgery. Listen in and learn about how to advocate for yourself or a loved one when you have a hospital stay.
Michelle Newman joins us from the Kirk Gibson Foundation to talk about plans their foundation has for Parkinson's patients living in Michigan. Kirk Gibson is a former professional baseball outfielder and manager and was named the National League MVP in 1988. During his career, he hit two dramatic home runs in the World Series! He is currently a color commentator for the Detroit Tigers on Bally Sports Detroit and a special assistant for the Tigers.
In 2015, Kirk was diagnosed with Parkinson's and expanded the mission of the foundation to raise awareness and funding for Parkinson’s Research.
In this episode, Jessica and Brian share a few tips and tricks that they use in their everyday life to make things a little easier. Everything from driving to clasping your necklace. Share your everyday tips with us in the comment section!
In this episode, our host, Jessica Krauser, takes you on an intimate exploration of the early days of her diagnosis to her remarkable transformation into an empowered advocate. Delve into the pages of her journal, where she meticulously documented the symptoms that led her to the life-altering diagnosis. Discover the depths of her prayer journal, where Jessica sought solace, answers, and guidance from God, grappling with the uncertainty and challenges that Parkinson's presented.
In this empowering video, we delve into the crucial role of exercise in the lives of people living with Parkinson's disease. Discover how exercise has been proven to slow the progression of Parkinson's and enhance overall well-being. Whether you prefer walking, biking, running, rowing, or lifting, we encourage you to do what you love while incorporating other activities like yoga for stretching, dance for coordination, balance exercises, and cognitive work.
We conducted a survey within our YouTube community to gain insights into how our loved ones cope with our Parkinson's disease. Some ignore it or stress about it, while others talk about it, seek professional guidance, or have joined a dedicated support group.
In this podcast, we delve into the intersection of cinema portrayls of Parkinson's and how we feel about carbadopa/levedopa.
In this exciting episode, we are thrilled to unveil the finished product of our much-anticipated First Step Set. In this episode, you'll get an exclusive sneak peek at the personalized items we curated for this kit. We already distributed 100 kits - listen to find out how you can support us and hopefully receive a kit in the future!
Join us as we chat with Danielle, a representative from the Michael J Fox Foundation, about the groundbreaking BioMarker study. Gain a deeper understanding of its impact on Parkinson's research and learn how you can make a tangible difference by joining Team Fox.
Join us as we embark on a journey that began as a straightforward Q&A session with the esteemed Dr. Patel, only to delve into a startling revelation. In this episode, we explore the necessity for individuals with Parkinson's who find themselves admitted to a hospital, be it for surgery or any other reason, to disclose specific medications hospital staff should avoid due to their condition. The significance lies not in the interaction with other drugs but rather in their interaction with Parkinson's itself. Don't miss out on this essential episode! Tune in now!
This is a very short segment, but Brian shares how he felt on his first vacation in 7 years (since his diagnosis). #Don'tBeAfraidToTravel!
Join us for a deep dive into the cutting-edge world of Parkinson's research and clinical trials! We've got the inside scoop from April's Team Fox MVP event, and we're excited to share all the latest breakthroughs with you. Plus, we're shining a spotlight on Michael J. Fox's powerful new documentary, Still. Don't miss this opportunity to stay informed and inspired!
If you've been diagnosed with Parkinson's and don't know how to talk to your employer or when to talk to your employer, listen to the advice we received when we interviewed a retired Law Employment Attorney! You don't want to miss it!
Telling family and friends about your diagnosis can be difficult. Did they deny it, accept it, or feel like they could fix it? Communicate, communicate, communicate!
Liz Miller is a psychotherapist and shares her Parkinson's diagnosis journey. Acting out dreams, depression, tremors, and finding a PD community.
The Secret Life of Parkinson's: In this episode, you'll hear from Bethany Richards, the Founder of Bike Box Project. A simple idea she had years ago (putting a box on her bike to raise awareness and donations for MJFF) has turned into a Parkinson's community of over 70 people living with PD in New Bern, North Carolina!
I can't say enough about Dr. Soania Mathur. To put it simply, she is extraordinary. She has been living with Parkinson's since she was 28...and now, 25 years later, she's not talking to us about her aches and pains (although I'm sure she has plenty), rather, she's sharing with us her path to advocacy. She said, "when you know better, you have to do better". And that's exactly what she's doing. Her passion and determination are changing the lives of others, not just locally, but globally.
Brian and I take a few minutes to answer questions that some of you have asked in our comments! We are also asking what questions you may have that we can address when we have Dr. Patel on again. Check out The Secret Life of Parkinsonn's on YouTube if you want to leave a comment/question
If you haven't heard about MRI-guided Focused Ultrasound (FUS), listen to our guest, Mark, a 60-year-old living with Parkinson's for 14 years, talk about his experience with the procedure. DBS was an option, but he wasn't thrilled with the idea of having wires in his head, so he decided to go the Focused Ultrasound route. He explains his outcome as "a second chance"...that it has been life-changing for him.
In this episode, Marcus Woodhouse joins us to talk about his adventures with pickleball and Parkinson's. It's a sport he picked up 1 year before he was diagnosed, but it's also a sport that is helping him more than he realized. It's the perfect combination of exercise, socializing, and constantly moving! He also shared with us that he is scheduled to have CereTom(r) DBS. Marcus and Brian discuss the differences between their two DBS surgeries. We'll follow up with him again soon to hear more about that procedure.
The Secret Life of Parkinson's: BRIAN IS BACK! In this episode, we spend a little time just catching up on how we are feeling. While we might look positive and put together, we all experience our off or bad days, and that's ok.
In this episode, I met with Jennifer, a Clinical Research Coordinator from the Cleveland Clinic in Ohio, who is working on an MJFF-sponsored research project called PPMI - Parkinson's Progression Marker Initiative. It's a landmark study collaborating with partners around the world to create a robust open-access data set and biosample library to speed scientific breakthroughs and new treatments. Jennifer explains how critical the PPMI study is to hopefully one day find what causes someone to have Parkinson's as well as other learnings they have found thus far.
In this episode, you'll meet one of my first young-onset friends, a young-onset woman that was diagnosed 3 years ago...just about the same age that HER mother was diagnosed when she was just a kid. You'll hear what it was like growing up with a young-onset mother as well as what it's like to have a young-onset now herself. Unlike most of us, she saw what Parkinson's is capable of. But, talking to her MDS on her first visit, she learned that there are so many new ways to slow the progression - things they didn't know back when her mom was diagnosed: medication management, nutrition, exercise, socializing, and reducing stress. Parkinson's affects more than just the individual...it can affect generations. So talk to your family about what you are going through or talk to a genetic counselor to learn more.
We don’t always remember how our first symptom felt, but when new symptoms occur, we are reminded…again, and again, and again. We might look like we are put together, but each of us, optimistic or not, will have our bad days. In this episode, I share mine with Melissa.
Are you bringing all the right things to your PD appointment to make the most out of the time you have? Jessica and her Neurologist, Dr. Andrea Malone, MDS at OhioHealth, discuss how patients and caregivers/family members can prepare for these important appointments.
I had no idea that over 75% of us (people with PD) will develop speech or voice problems at some point along our PD journey. We learned about voice exercises from our previous episode, #45 with Gina a Speech Pathologist, but in this episode, Dr. Loochtan from Ohio ENT will talk about procedures patients can undergo.
We welcome Dr. Patel, MDS from OhioHealth, back to our podcast. In this episode, we discuss why there is a lack of standardization when it comes to medication and treatment for Parkinson's.
The Secret Life of PD: What a great year! While many people don’t think of Parkinson’s as a blessing, we do. 2022 brought us connections with people across the world that otherwise would not have happened. We want to thank you for your support, positive comments, and questions. Keep them coming. We have a lot more in store for 2023!!! Stay tuned!
Ever wonder what your vocal cords look like? Check out this episode as we talk to Steve, our podcast Producer and person with Parkinson's, along with his speech therapist, Gina. Learn the different exercises and therapies available for people that experience voice changes due to Parkinson's.
Did you know people living with Parkinson's can receive botulinum toxin (aka Botox) injections to help relieve rigidity and in some cases tremors and even drooling? Learn more from Dr. Patel, MDS at OhioHealth.
The Secret Life of PD: This holiday season, if you are living with PD, give yourself a pass. Be a little selfish. Stick to your routines. The holidays can be a stressful time for anyone. Stress + Parkinson's = increase in symptoms. So do yourself this holiday season, especially if you have a very big, loud extended family like mine (I mean that in the most loving way possible - and my family would agree), take a break. Allow yourself some time to do what's best for you. Happy Holidays!
The Secret Life of Parkinson's: Freezing of Gait (FOG) is just another potential symptom that people living with Parkinson's may experience. In this episode, we talk to Ginger, a fellow PDNextSteps gym member, who was diagnosed in 2020 and has been dealing with Freezing of Gait for the past year. She shares what it feels like and a few tips that work for her.
The Secret Life of Parkinson's welcomes Jimmy Choi! If you have Parkinson's and don't know Jimmy yet, you have to check this out. He has been living with Parkinson's for over 20 years and is a huge advocate for people living with Parkinson's. During the pandemic, he and his wife started the #MOVEmber4PD - a month-long virtual event to mobilize people to MOVE and spread awareness on how moving helps people with Parkinson's.
The Secret Life of Parkinson's: Over the top. I used to think running a marathon was over the top. Joe Drake has now given over the top a new meaning. In his new book "Run With It" we learn that it's not just the fact someone with Parkinson's is running a marathon that's over the top. Tune in to this episode to learn more.
The Secret Life of Parkinson's: What do you wish you knew when you were diagnosed with Parkinson's? Listen to what some people with Parkinson's wish they knew when they were diagnosed.
The Secret Life of Parkinson's: People are scared when they hear they are diagnosed with Parkinson's. What scares us the most are stories we hear from others or our own memories of family or friends living with Parkinson's that did not have a good life because they gave in to the disease, they didn't exercise (or know to exercise), or it was so long ago that the medications and therapies we now have were not available. So how can we look at Parkinson's as a detour and not a roadblock in life?
The Secret Life of Parkinson's: Check out the last phase of Brian's DBS process - getting the program turned on! His journey with DBS continues, but how it's all about tweaking the program to provide him with the best outcomes for his Parkinson's. Thanks for bringing us along, Brian!
The Secret Life of Parkinson's: In 2020, Carrie Boorse was caring for her 14-year-old daughter who was diagnosed with cancer. During the 6 months of her daughter's chemo treatment, Carrie noticed something was off. Now that her daughter is cancer-free, Carrie started to focus on the pain and issues she noticed months earlier. Her doctor assured her that whatever she was feeling was probably due to the traumatic experience she just endured. But Carrie wasn't sold. That's when she met with a Neurologist...or three.
The Secret Life of Parkinson's: Another great episode with Melissa Carlson, fitness instructor, and Owner of PDNextSteps. In this episode, Melissa explains that it's never too late to start strength training - so start today if you haven't already!
The Secret Life of Parkinson's: Did you ever wonder what the Parkinson's Foundation has to offer people living with Parkinson's and caregivers? Well, tune in and find out the resources that are right at our fingertips to live a better life today.
The Secret Life of Parkinson's: Ever feel like life is just too hard with Parkinson's? While she may have hard days like the rest of us, Karen Downing shares her experience with not just Parkinson's, but heart disease and breast cancer (2x survivor)! At the age of 72 after her PD diagnosis, Karen started exercising for the first time. She makes no excuses for bettering herself. Do you?
The Secret Life of PD: We would like to welcome Dr. Wayne Markman, CEO of Symbyx Biome in Australia. Wayne shares his knowledge of the history of light laser therapy. Is this a new tool to help slow the progression of Parkinson's?
This is not a paid promotion. Brian and I were simply interested in the device and wanted to learn more in this area.
The Secret Life of Parkinson's: In this episode, we check in with Brian who has gone through deep brain stimulation surgery: the right side in June, the left side in July, and the battery implant in August. We get a chance to talk to him about the ups and downs, right before his DBS equipment get's "turned on".
The Secret Life of Parkinson's: in this episode, Matthew Moore (artist, educator, and young-onset PD patient) shares his journey with Parkinson's and how he wrote a play about it. Diagnosed in 2019, Matthew has continued his acting career but wanted to bridge the gap between the patient and their medical team. He wrote a play using his own experiences and interviewing other people with PD and their caregivers. His goal for the play is for others to understand our daily struggles and have empathy along our journey.
In this episode, we welcome the co-founders of the 5KforJK walk for Parkinson's: Carrie Schaefer and Melissa Carlson (Michelle Adams was not available). The 5KforJK is now a 501(c)(3) nonprofit organization, but it started in 2021 as a 5K event to bring awareness to the Parkinson's community. Through that one event, we connected to the Michael J Fox Foundation, connected with more PD patients locally in Columbus, and also made connections across the globe. Check out this episode and learn how the 5KforJK was founded and where we are headed.
The Secret Life of Parkinson's: This episode was created because of a comment we received from one of our listeners. The question was: "I thought my doctor was great until I realized he was treating the disease and not me, the patient. What criteria do others look for in finding the right Neurologist / Movement Disorder Specialist?" So I reached out and asked my local PD community. This episode shares their criteria based on experience.
The Secret Life of PD Special Episode: If you listened to our previous episode with Naomi Hoyt, you won't want to miss this one! Naomi, a Yoga instructor, walks us through 5 yoga movements anyone can do right from their chair (and in jeans - if you're like Brian!). So take a seat and a deep breath and join us for 12 minutes of yoga!
The Secret Life of Parkinson's: In this episode, we talk with Naomi Hoyt, a Yoga Instructor who specializes in adults over 50 years old. Naomi also works with Parkinson's patients and wanted to share how Yoga can benefit everyone - Parkinson's or not - and the top 5 myths that people commonly think about when it comes to Yoga. Spoiler alert!! Yoga isn't just for flexible, young women - anyone can do it at any age!
On episode #26 of The Secret Life of Parkinson's, Brian Baker shares more details about his journey with Deep Brain Stimulation (DBS) surgery. He walks us through how he made the decision, what it was like waiting in the hospital, how it felt while they were doing the procedure, and how he felt the days following. Brian goes in for his next surgery tomorrow (Friday) for the other side - good luck, Brian!
Joining us today is my son Ben! He's 12 years old and going into 7th grade. Ben and his twin sister, Kate were 9 years old when I was diagnosed, but they noticed my symptoms earlier than that (before we knew what it was). I told them both a few months after I was diagnosed, and we talk about the disease often (when I'm fundraising or having a bad day), but I never actually sat down and talked to them like I did today with Ben. But I'm glad I did - kids know more than we think!
The Secret Life of PD: special edition!!!!
Our very own Brian Baker talks to us 2-days post DBS! See his newly shaved head and hear how his first procedure went! So proud of you Brian! (Sorry, to our producer, Steve! Brian and I went rogue and didn’t run this by you 😉).
The Secret Life of Parkinson's: We got another update on Roz - now with her DBS connected and "turned on". She is doing great and has wonderful tips to share and as usual, an amazing outlook on life. We can't thank you enough, Roz, for sharing your Deep Brain Stimulation Journey with us! We'll check back in with her soon!
The Secret Life of PD: In this episode, we welcome Ruth Stenberg. Brian and I exercise with her husband Rick, who was diagnosed with Parkinson's a few years ago. We appreciate all the caregivers out there and want to give a special thanks to Ruth, for opening up and sharing personal insights that may help another PD patient or caregiver. My favorite takeaway was when she discussed the importance of COMMUNICATION. Having Parkinson's, people naturally want to help and do things for you. But sometimes we want to do it on our own. So talk to your PD patient or talk to your Caregiver on areas you want help/support and areas you don't.
The Secret Life of PD: It's not easy being at the peak of your career and then learning you have Parkinson's. Brian and I discuss our career path post-Parkinson's and how we try and manage and minimize the stress from our jobs that can increase our symptoms.
The Secret Life of PD: Many people don't realize HOW to take their Parkinson's medication...or I should say, how to start. First, don't just start taking the prescribed amount on day 1: titrate up slowly. So if you are told to take 3 carbidopa-levodopa each day, start by taking half a pill each day for 3-4 days, then increase by another half pill. Do this until you are up to your prescribed dose. Consult with your doctor or pharmacy first. But by doing this, I was never nauseous or lightheaded in the beginning because I was getting my body used to the medication.
The Secret Life of PD: While Brian and I may be cheerful today, there were and still are those "darker days" with Parkinson's. Over 50% of PD patients deal with non-motor symptoms, including apathy (feeling joyless / emotionally flat); and depression (a shorter change in mood vs. a constant state of sadness). Make note of changes in your feelings and behavior. These symptoms are commonly overlooked and untreated.
The Secret Life of PD: In this episode, we talk about how "size matters" with Parkinson's. Melissa Carlson, owner of PDNextSteps share with us that Parkinson's makes our movements smaller, our voices quieter, and even our writing gets smaller. But by practicing BIGGER movements and overexaggerating our moves and our voices, we can retrain our brain. So go big or go home!
The Secret Life of PD: Today Brian and I discuss fears we had when we were initially diagnosed with young-onset Parkinson's. Things like: will my kids get PD, will we be in a wheelchair anytime soon, will I lose cognitive abilities, or will we have a masked face (showing no emotion)? We all struggle with different fears in the beginning, but as time progresses and you start and/or continue to exercise, take medication and join a PD community, we hope that fear lessens.
The Secret Life of PD: In this SPECIAL episode, I get an update from Roz, (a Parkinson's friend) who shared her pre-DBS story in Episode #7. Now, after 3 surgeries, she talks about her experience and what is still to come. Thanks again, Roz, for opening up and sharing your story!
(Special thanks to my son, Ben, who stepped in to do the editing of this video while Steve is out of town. Not bad for a 12-year-old! :)
The Secret Life of PD: In this episode, Joel Sivillo, a Physical Therapist, walks us through various tips and tricks that Parkinson's patients can use if they experience freezing of gait. For those that experience freezing, this is definitely the episode you want to tune into. Check it out!
In this episode, we welcome Steve Brandenburg back to talk about, and show us, his entire DBS (Deep Brain Stimulation) journey. While we may joke and make light of his "party trick" (showing his tremor come on then off again), with the DBS remote, it is a very deep and emotional "trick" to share. We are so grateful for him being vulnerable and allowing everyone to see and hear what it's like to have DBS surgery. Please remember, we are just patients discussing OUR experiences. We are no medical professionals.
In this episode, Brian and I have the opportunity to interview Dr. Patel, a Movement Disorder Specialist at OhioHealth here in Columbus, OH. What a great segment! If you are new to Parkinson's (or even if you've had it for years), Dr. Patel does a great job explaining Parkinson's, dopamine, carbidopa-levodopa, medication vs surgery, and Neurologist vs MDS. We touched on a lot! This is perfect for anyone curious to learn more about PD.
In this episode, Melissa Carlson and I share what we learned at the Team Fox MVP Celebrations in New York City. Team Fox is the grassroots community fundraising program of The Michael J. Fox Foundation and each year they bring the top fundraisers together to share the latest on research, what they are funding, and to network with one another. In 2021, my Team Fox group raised over $86,000! And we're doing it again this year.
In this episode, I share Steve Brandenburg's PD story, "Pass the Kool-Aid". Steve is a PD patient who has undergone DBS surgery (which we will talk about in a future episode) and is our Podcast Producer. He shares his fears, and the dark place he went to; but then he shares how he found hope and a community that changed his outlook on life. We all want to "get to the other side" of this diagnosis (aka: feel normal again). So we need to learn how to accept it and find others we can relate to you. Find a community of PD patients that you can talk to - get to that other side.
In this episode, our special guest, Samantha Anderson, shares her diagnosis journey. As a 36-year-old Young-onset Parkinson's patient, Samantha has fears of what Parkinson's will bring to her future, but instead of constantly focusing on "what might happen", she decided to start "living in the present".
In this episode, our special guest, Dave Kolbe, a local Construction business owner, talks about his journey with Parkinson's (and a cancer diagnosis). He talks about how he shared his diagnosis with family, co-workers, and eventually his clients. Learn how Dave handles stress, incorporates exercise, and how he's managing the future of his company. A true inspiration!
In this episode, our special guest, retired Major General Denny Laich, shares how the stoic philosophy helped in dealing with his recent Parkinson's diagnosis.
In this episode, we share our personal stories of how we each talked to family, friends and co-workers. Each in our own way - as we say in our exercise class, "you do you". I talked to everyone and everyone but that's just me. You might want to keep things to yourself. But I hope it helps to hear how others have shared their diagnosis.
In this episode, we have a show and tell! As our disease progresses, our ability to do everyday tasks becomes more difficult. Brian shares a few of his favorite products - ranging from an electric toothbrush to a specific mouse of his computer and many more!
In this episode, we are joined by Roz Parish, a Parkinson's friend, who is preparing to undergo DBS surgery (Deep Brain Stimulation) two weeks from now. We had her share her excitement, fears, and ultimately, what led her to this surgical decision. DBS might not be for everyone, but it's always helpful to know what options are out there for PD patients. As always - consult with your doctor!
In this episode, our special guest, Melissa Carlson, owner of the gym, PDNexSteps, talks about the importance of adding exercise to our daily routine. We focus specifically on how squats benefit everyday living such as getting in and out of a car, standing up, and sitting down. Squats - they're game-changers :)
In this episode, we discuss how rigidity and dystonia in your feet affect our everyday lives. From how it feels to drive a car to not being able to wear high heels any longer due to the discomfort. As always, talk to your doctor about new or worsening symptoms. There may be things that can help outside of medication like exercises or botox. And don't be shy - go out and find some cute, stylish, but comfy orthopedic shoes!
In this episode, we discuss the importance of sleep. Getting quality sleep is important for everyone - regardless of a diagnosis. For those with Parkinson's, give yourself a pass and know it's ok to slow down during the day and take a nap...schedule one if you need to!
In this episode, we discuss another side of Parkinson's that is not visible to others - hallucinations. PD patients who experience hallucinations may dismiss what's occurring or hesitate to discuss it with caregivers, fearing what others think. Speak up and talk to your physician.
In this episode, we share our stories about feeling "Emotionless, Empty, and Joyless", even though we know we are happy with family, friends, and life. It's a symptom most of us overlook. We don't necessarily tie our emotions and mood to Parkinson's; when in reality, it is a very real symptom that affects so many PD patients.
This is our first podcast in "The Secret Life of PD". In this episode, we discuss symptoms leading up to our diagnosis, how we felt, and what we knew or thought we knew about Parkinson's.