The Secret Life of Parkinson's

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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?Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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?Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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".Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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. Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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! :)Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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. Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & 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-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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!Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 :)Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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! Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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! Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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.Support this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy