The Secret Life of Parkinson's

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 thei...

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 loca...

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 sh...

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! Support this podcast at — https://redcircle.com/the-secret-life-o...

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...

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,...

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 t...

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 😉). Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donations Advertising Inquiries: https://redcircl...

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! Support this podcast at — https://redcircle.com/the-secret-life-of-parkinson...

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 o...

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. Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donations Advertising Inquiries: https://redcircle.com/brands P...

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....

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 overlooke...

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! Support this podcast at —...

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 exer...

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...

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! Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donations Advertising Inquirie...

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 ha...

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...

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'...

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...

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". Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donations Adverti...

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! Support this podcast at — htt...

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. Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donations Advertising Inquiries: https://redcircle.com/brands Privacy & Opt-Out: https://redcircle.com/privacy

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. Support this podcast at — https://redcircle.com/the-secret-lif...