The Secret Life of Parkinson's

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 Advocacy09:59 Creating a New Paradigm for Parkinson's Care19:51 Documentary Project: Sharing Lived Experiences29:46 Innovative Approaches to Parkinson's TreatmentAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 Health03:10 Diane's Journey with Parkinson's05:54 The Intersection of Therapy and Parkinson's09:01 Socialization and Community Support12:00 Coping Mechanisms and Mental Health15:12 Navigating Medication and Treatment17:57 Addressing Night Terrors and Hallucinations20:44 Conclusion and Encouragement for Seeking HelpSupport 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 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's02:05 Katherine's Journey into Caregiving04:00 The Diagnosis Experience07:03 Understanding Parkinson's Symptoms10:02 The Role of Caregivers12:58 Support Groups and Community Learning16:01 The Importance of Medication and Exercise19:00 Advocacy and Patient Rights21:50 Navigating the Healthcare System as a Caregiver24:57 Adjusting to Life with Parkinson's27:50 The Impact of Parkinson's on Relationships30:14 Becoming a Certified Patient Advocate33:09 Working Together as a Team in CaregivingSupport this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

00:00 Introduction and Personal Stories02:58 Diagnosis Journeys and Experiences06:06 Living with Parkinson's: Acceptance and Medication09:02 The Role of Exercise and Community12:06 Socialization and Support in the Gym14:59 Encouragement for New Diagnoses17:56 Future Aspirations and Activities21:02 Navigating Daily Life with Parkinson's23:46 Conclusion and Final ThoughtsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

Oh DBS...why is it so hard to decide.Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

0:00 Introduction2:06 Jess's Neuropsychological test experience3:46 The influence of stress on cognitive function5:55 How does the doctor define stress8:04 Recommendations when you do experience stress9:47 Depression can mimic Dementia11:55 Neurophsycology looks at the functioning of the brain13:58 How Neuropsycology is different from other disciplines that look at cognitive functioning 15:20 Helps to have a baseline test16:55 Applying for disability due to brain function19:58 Normal aging or Parkinson'sAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

00:00 Welcome Warren Hanna02:10 Experiences for a new YOPD patient04:51 Reaction from family06:50 It doesn't progress overnight07:17 How did you know10:25 What regimen did you choose to start21:33 Prioritizing exercise24:16 Control the controllables25:03 How Baseball training has helped30:10 Becoming an advocateSupport this podcast at — https://redcircle.com/the-secret-life-of-parkinsons/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

00:54 Police officer diagnosed with Parkinson's in 202002:17 Connecting the dots between exposed chemicals to PD03:34 Putting yourself in danger and you don't even know it06:38 More awareness needs to be done around police and fireman08:00 Accepting Parkinson's while bringing awareness to the potential reason10:17 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/Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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

"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 #yopdAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 Intro3:15 Living solo you do things for yourself4:06 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 community13:03 There needs to be a PD training class - how to live with PD15:03 Being your own CarePartner15:54 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 secondsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

0:00 - Intro1:02 - can you dance?2:09 - Would you do a dance class?2:57 - What does dance help with?3:44 - Laugh together4:04 - Dance is spiritual5:03 - Dance classes in U.S.5:58 - What does dance help with7:19 - Jess took an adult dance class9:15: Parkinson's Prom idea10:50 - New year, new youAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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

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=61563836532593https://www.parkinsons.org.uk/news/were-investing-beech-band-wearable-device-aims-manage-parkinsons-symptoms#parkinsons #parkinsonssymptoms #parkinsonsawareness #beechband #carlbeech #spotlightYOPD #yopd #parkinsonsdiseasesupport #innovationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

Just a mix of different topics:Shoes, PDNextSteps program, Parkinson's expenses, future episodes, and other random things.Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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 Needling1:05-2:58 Brian's PT Ryan2:59-3:51 What is dry needling?3:52-6:24 Where to focus dry needling6:25-7:53 Dry needling vs. acupuncture7:54-8:59 Brian's experience9:00-10:11 Dry needling for Dystonia10:12-11:47 What is cupping?11:48-12:54 Cupping vs. needling12:55-14:52 Things to take into consideration14:53-18:58 How long do the needles stay in?18:59-22:31 Who should consider dry needling?Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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

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

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

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

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

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

Don't forget, you can also check out our video podcast on YouTube: https://www.youtube.com/@thesecretlifeofparkinsonsMeet 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.Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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

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. 1. Want to see if anyone else has shoulder pain and if so, how did they treat it? 2. Want to learn what diets have worked best for people with PD? 3. 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/parkinsonsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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

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.

In this episode, Steve and I interview Ellen Walter. She's a Nurse Practitioner at the Cleveland Clinic and has been working with Steve on his medications and DBS needs for the past 4 years. She provides an inside look into the type of care nurse practitioners provide their Parkinson's patients. I wish every office had an Ellen! Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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-planOrder the book: https://www.parkinson.org/resources-support/pd-library/order-publicationsIf 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.

Brian and Jessica share future episodes that you can expect in 2024!

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!