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Deciding whether to move forward with deep brain stimulation can feel like a huge step. In this episode, we talk with Kelly Geyer about his Parkinson’s journey, what led him to start considering DBS, and how he worked through the decision. Kelly shares what the evaluation process was like, what he hopes DBS will improve, what it can’t fix, and some of the emotional questions that come with making a decision like this. We also talk about device options, surgery, long-term maintenance, personality changes, expectations, and why having a medical team you trust matters so much. If you’re considering DBS—or just starting to wonder whether it could someday be an option for you—Kelly’s experience offers a really honest look at what goes into that decision. Chapters 00:00 – Meet Kelly and His Parkinson’s Story 03:18 – When Medication Wasn’t Enough 05:40 – When DBS Entered the Conversation 06:37 – What the DBS Evaluation Really Looks Like 08:28 – The Emotional Side of Saying Yes to DBS 11:15 – What Kelly Hopes DBS Will Change 12:40 – Understanding What DBS Can—and Can’t—Do 18:49 – Surgery, Device Options and Battery Life 24:58 – Kelly’s Advice for Anyone Considering DBS 25:24 – Finding Support in the Parkinson’s Community This episode was brought to you by Changing Parkinson's. If this podcast has meant something to you, consider making a gift to help keep it going. And join our PDNextSteps Home Workout Series with over 100 custom workouts delivered to your living room. Visit http://changingparkinsons.org to give, get moving, or join our newsletter. #Parkinsons #ParkinsonsDisease #ChangingParkinsons #Neurologists

Junior year homecoming with my twins gave me 1 win and 1 heartbreak as a mom living with Parkinson's — and a DBS win for now. I made my daughter Kate's bouquet with her, but I couldn't pin my son Ben's boutonniere because of slowness in my fingers. If you know that feeling, this one's for you.

A Parkinson’s diagnosis usually comes from a doctor. But learning how to actually live with Parkinson’s happens somewhere else. In this episode, we chat with Katie Webster about the gap between medical care and the day-to-day reality of living with Parkinson’s — and why community, education and trusted resources matter so much. They discuss how organizations like Changing Parkinson’s and resources like The Secret Life of Parkinson’s podcast can help people feel less alone, better understand what they’re experiencing and become more confident navigating life with Parkinson’s. Katie also shares why creating a safe, trusted community is so important, the emotional journey that often follows diagnosis, and how resources for newly diagnosed individuals, exercise programs and patient-led education can help fill some of the gaps traditional healthcare simply can’t. Because sometimes the first step into the Parkinson’s community isn’t walking into a support group. Sometimes it’s pressing play. Chapters 00:00 Introduction to the episode and guest 00:28 The purpose of the podcast and nonprofit 02:25 Addressing the gap between diagnosis and reality 04:18 The importance of community and feeling safe 06:14 The impact of community on new diagnoses 08:04 The role of the podcast in education and support 12:10 The reach and impact of the podcast at the World Parkinson's Congress 16:48 Challenges in growing a nonprofit organization 22:55 The emotional journey of diagnosis and acceptance 26:57 Resources and support tools for newly diagnosed 27:23 Call to action and closing remarks

In this episode, Brian Baker shares what happened after just 4 days doing the 66 parkinson's voice project SPEAK OUT program from home — for free. From vocal warm-ups like "may me my mo moo" to counting 1-12 with intent, to reading about table tennis with inflection, he breaks down what actually works for soft speech, and why remembering to speak with intent at work is so hard. 0:00 - Brian started something new: SPEAK OUT 1:15 - What is the Parkinson's Voice Project? 2:40 - How the free daily online classes work (15-20 min) 4:10 - Warm-ups: may me my mo moo + sliding ahs 5:20 - Counting 1-12 with INTENT + inflection practice 6:15 - Swallow with intent & aspiration 7:45 - Does focusing really make Parkinson's symptoms stop? 8:50 - How to find a SPEAK OUT speech therapist near you 9:45 - Last 30 seconds: exercise your voice like you exercise your body This episode was brought to you by Changing Parkinson's. If this podcast has meant something to you, consider making a gift to help keep it going. And join our PD Next Steps Home Workout Series with over 100 custom workouts delivered to your living room. Visit changingparkinsons.org to give, get moving, or join our newsletter. #Parkinsons #ParkinsonsDisease #SpeechTherapy #SpeakOut #ParkinsonsVoiceProject

Dr. Patel shares the signs and symptoms to look for when it comes to Lewy Body Dementia, Parkinson's Dementia and Alzheimers. We originally recorded in 2023 as Ep. 80, remastered in 2026 because it's a topic that has come in up recent conversations with friends in the PD community. Subscribe and never miss an episode of The Secret Life of Parkinson's, powered by Changing Parkinson's: http://bit.ly/4gQM3CB The Secret Life of Parkinson's podcast is powered by Changing Parkinson's, a non-profit we started to meet PD patients where they are to help live their best life today. Visit www.changingparkinsons.org and sign up for our newsletter!

In this episode, we meet Jason and Angie, a couple navigating Parkinson's together since Jason's diagnosis at age 42. They share how Parkinson's has affected their marriage, the importance of communication and humor, and how they've learned to take life one day at a time. It's an honest conversation about the challenges Parkinson's brings—but also about staying connected, finding hope, and remembering that Parkinson's is only one part of their story. Chapters: 00:00 Meet Angie & Jason 02:24 Jason's Parkinson's diagnosis 06:48 Finding community and support 08:13 Parkinson's, marriage & intimacy 10:17 Communication and staying connected 17:13 Taking Parkinson's one day at a time 20:01 Advice for newly diagnosed couples 22:22 Choosing hope

In this episode, we explore Parkinson's pathways, a tool designed to help patients navigate clinical trials more easily. Guest Spencer Garrett shares how the platform was built for his father and how it aims to empower the Parkinson's community with accessible, vetted trial information. Chapters 00:00 Introduction to Parkinson's pathways and guest Spencer Garrett 02:23 How the platform helps patients find relevant trials 05:41 Understanding trial procedures and patient burden 09:05 Features like printable trial summaries and guidance 11:29 Resources for newly diagnosed patients 12:51 The importance of hope and ongoing research 14:48 How the platform is maintained and updated 16:17 The role of research versus clinical trials 17:43 Expanding trial access and symptom-specific alerts 18:40 Closing remarks and encouragement to explore Parkinson's pathways. This podcast is supported by our non profit, Changing Parkinsons. Please visit www.changingparkinsons.org to donate or sign up for our monthly newsletter!

I did a quick video to highlight the importance of understanding both motor and non-motor aspects of Parkinson's and what DBS covers and doesn't cover. Chapters 00:00 Introduction to Jessica's Parkinson's journey 01:59 Jessica discusses her medication regimen and motor symptoms 04:04 Limitations of DBS in treating non-motor symptoms 05:53 The emotional and psychological impact of Parkinson's 06:48 The importance of comprehensive treatment approaches Visit www.changingparkinsons.org to sign up for our monthly newsletter and to learn more about what our non profit has to offer those living with Parkinson's!

This episode explores how improv and creative programs like those at Northwestern and Second City can help individuals with Parkinson's improve their mental agility, social engagement, and quality of life. Doug Blanchard shares his personal journey with Parkinson's and how participating in improv has made a positive impact. Chapters: 00:00 Introduction to Doug Blanchard and the podcast 02:23 Details of his DBS surgery and ongoing treatment 05:13 The structure and community of the 10-week improv program 07:54 Getting involved and overcoming nerves in improv 10:19 Using improv scenarios to enhance quick thinking 11:18 The fun and social aspect of improv for Parkinson's 12:45 The impact of improv on cognitive and emotional health 13:43 Other exercises and physical activities for Parkinson's 15:10 Potential for local improv initiatives and community outreach 16:09 Closing thoughts: staying active mentally and physically

If you or someone you love has been moved by an episode or touched by our kit or experienced an exercise class, please consider supporting our efforts!! This is hard for me to ask/share, but we are powered and can do more with support and donors, by Changing Parkinsons nonprofit. Visit www.5KforJK.org for our fundraising walk named after me (Jessica Krauser) that is happening on Oct 4, 2026 or visit www.changingparkinsons.org to learn more about our efforts and how you can support us throughout the year! Either way, consider donating to something that has hopefully made a difference in your journey!

In this episode, Dr. Patel is back with us and shares insights on living with Parkinson's, emphasizing the importance of medication adherence, routines, and mental health support for patients and caregivers. Chapters 00:00 Introduction and Dr. Patel's background 02:09 Initial conversations with newly diagnosed patients 04:01 Importance of medication adherence and timing 06:50 Role of exercise in managing Parkinson's 09:09 Dealing with off periods and early intervention 11:07 Psychological aspects and mental health support 13:01 Impact of routines and lifestyle adjustments 15:48 Supporting caregivers and family dynamics 19:00 Therapy, routines, and mental health strategies 22:06 Travel, vacations, and managing symptoms on the go 23:59 Personality, motivation, and individual differences 25:47 Final advice for newly diagnosed patients

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