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YOPN’s Living Well Starts Here 0

YOPN’s Living Well Starts Here

Join us as we chat with members of the YOPD community Disease, care partners and experts in the YOPD field to learn more about this neurodegenerative disease and those living with it....more
YOPN

All Episodes (33)

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    5. SEGMENT THREE: DEVELOPING A WELLNESS PLAN TO MANAGE YOUR DIAGNOSIS

    Thanks to Ellen Bookman for taking the lead on this seriesSpecial thanks to StanandTeresa Jackson for coming on the show (Part 3) and sourcing great guests for this series.

     

    Teresa Jackson is a National Board-Certified Health & Wellness Coach (NBC-HWC), Duke Integrative Medicine Coaching Program, and a Certified Coach— International Coaching Federation who will:

    • Discuss how to take what you have learned about mental wellness, develop a plan, and apply it to your everyday life in concert with the medical management aspect of the disease.

    Karen Goble, Director at Southern Regional Area Health Education, an ordained chaplain, and a certified Integrative Health Coach and Cognitively Based Compassion Training teacher through the Emory University Center for Contemplative Science and Compassion-Based Ethics will:

    Discuss the benefits of utilizing calming techniques such as meditation and breathing as a tool to maintaining Mental Wellness.

    Mental Health Series

    Segment 2

    https://yopn.podbean.com/e/mental-health-part-2-with-ellen-bookman-and-dr-charles-dent/

    Segment 1

    https://yopn.podbean.com/e/maintaining-emotional-health-is-as-important-as-the-medical-management-of-any-chronic-disease-diagnosis/

    Dec 07,2022 01:03:49
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    8. PART 2: Mental Health: Navigating through Life with Ellen Bookman and Dr. Charles Dent

    Welcome to Segment 2 of our mental health series

    Segment 1 included

    MENTAL HEALTH SYMPTOMS ASSOCIATED WITH A YOPD DIAGNOSIS which can be found here

    https://twomikespdpodcast.podbean.com/e/maintaining-emotional-health-is-as-important-as-the-medical-management-of-any-chronic-disease-diagnosis/

    In segment 2 we discuss a PRIMER ON WAYS TO STAY MENTALLY HEALTHY AS YOU NAVIGATE THOSE THINGS IN LIFE THAT where we:

    Discuss how we process and understand feelings and emotions as we deal with situations unique to those diagnosed with YOPD

    Offer insight into managing and expressing feelings

    Dive into how we connect with others

    Describe how we function or “put the pieces together” to make life decisions such as family, marriage, work, retirement, etc.

    Our guest is Dr. Charles Dent:

    Dr. Charles Dent, M.Div, PHD., is a licensed Mental Health First Aid Trainer, Coach and Therapist. Dr. Dent, a Veteran of the US Marine Corps

    Special thanks to Ellen Bookman and Theresa Jackson

    Nov 07,2022 52:45
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    13. Maintaining emotional health is as important as the medical management of any chronic disease diagnosis

    Thanks to Ellen Bookman for taking the lead on this seriesSpecial thanks to StanandTeresa Jackson for coming on the show (Part 2) and sourcing great guests for this series. Maintaining emotional health is as important as the medicalmanagement of any chronic disease diagnosis Monday at 8AM EST on radioparkies.com, we begin a 3-part Mental Wellness series created to educate those diagnosed with YOPD on the importance of maintaining mental wellnessMany diagnosed with YOPD may experience a flood of emotions, particularly when the diagnosis comes in the prime of life - as it does with YOPD.The 3-part Mental Wellness, Sponsored by the Young Onset Parkinson's Network (YOPNetwork.org), will: Identify non-motor symptoms such as depression, anxiety, lack of sleep, apathy, etc. Discuss how non-motor symptoms can affect everyday life such as how to deal with family, work, retirement, telling people, etc. Offer tips on how to develop a mental wellness health plan Examine how mediation can be a component in maintaining mental wellness. SEGMENT ONE:MENTAL HEALTH SYMPTOMS ASSOCIATED WITH A YOPD DIAGNOSISBo Majors, Licensed Social Worker, employed by Texas Children’s Pediatrics in Austin, Texas, who will Identify mental health symptoms associated with a YOPD diagnosis. Discuss the consequences of physicians focusing only on the diagnosis, clinical assessment, evaluation, and medical management of our symptoms 
    Sep 13,2022 45:34
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    14. John Cullen will not let Parkinson’s define him

    This week on radioparkies.com sponsored by the Young Onset Parkinson's Network (YOPNetwork.org) we chat with John Cullen about his documentary.The documentary, “It’s Just Parkinson’s” is an inspiring and emotional look at one man’s journey to live life to the fullest, while living with a disease that has no cure.John Cullen is a 62-year-old man battling Parkinson’s disease with grit, courage, grace, and a warrior mindset.A lifelong athlete, Parkinson’s has slowly taken Cullen out of many athletic pursuits. Yet after being introduced to powerlifting, and incorporating it into his workouts, the improvement to his mobility has been staggering.In a dramatic finish, Cullen competes in his first ever powerlifting contest.IJP is about life, death, brotherhood and the profound impact of mindset in the face of adversity.You can see the documetary here: https://vimeo.com/706326801Password: Password: Lemond19898xii
    Sep 06,2022 01:00:44
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    15. Mark Milow helps others with their Parkinson’s diagnosis through social media

    Mark Milow interacts on social media platforms as #markinthepark21 and shares really informative and fun content while bringing awareness to Parkinson’s Disease.Diagnosed with Parkinson's himself in 2020 during the Covid boomMark immediately searched for a way to add meaning to his diagnosis and found that meaning through patient advocacy!When he received his diagnosis, there were so many questions Mark wanted answered and he felt overwhelmed. Mark then made the determination that he would help others through that difficult experience and would do whatever he could to provide assistance to Parkinson’s patients and the family or caregivers that are impacted.Mark can be found on Instagram, TikTok and YouTube as @MarkInThePark21 . His Instagram is https://www.instagram.com/markinthepark21He also has a Facebook Group for Parkinson’s Awareness that can be found at MarkInThePark21 in the “Groups” section of FB.Here's a list of all Mark's social media platforms linktr.ee/markinthepark21
    Aug 29,2022 47:33
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    16. Darbe Schlosser explains how to break through bradykinesia

    Darbe Schlosser is the coach, consultant, & creator of the Motorvation System. Motorvation (https://www.motorvationfoundation.org/) provides scholarships for People with Parkinson's to receive fall prevention consulting and coaching. They have administered over 900 hours of training through the Parkinson's Foundation community grant. They are in the process of developing a rehabilitative training taxonomy to improve the deliverance of rehabilitative training to the Parkinson's demographic.In addition to developing the best strategies to overcome movement abnormalities within a highly variable disease, Darbe also focuses on improving the deliverance of these methods with consideration of movement history, movement goals, and individual constraints that impact learning and performance outcomes.‍She believes there exists an interrelatedness between motor output and sounds. Understanding these relationships can better provide you with tools on how to break through mental and motor blocks and successfully deconstruct and reconstruct complex movement patterns.
    Aug 04,2022 39:10
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    18. SEASON 1 - EPISODE 14 Kevin Kwok tells his story including working with Big Pharma

    The Young Onset Parkinson's Network Podcast (YOPnetwork.org) is proud to present a conversation with Kevin Kwok!Kevin tells his story and discusses being an ambassador of Davis Phinney, his talks with DP and gives his insight of the pharma/biotech industry where he spent years building a great career.About Kevin"9 years ago, at the age of 48, I was diagnosed with Young Onset Parkinson’s Disease. After recovering from the shock of this diagnosis, I opted to embrace my disease. Having been trained as a clinician (PharmD- U of Michigan 1986) and a 30 year executive in the biopharma industry, I approach my disease with a unique involvement and curiosity at multiple levels. To quote Michael J Fox, “when you’ve seen a Parkinson’s patient, you’ve only seen one patient.” The issue is that no two PD patients are exactly alike, and this poses a dilemma in treating our tribe according to traditional clinical paradigms. This is where personalized medicine (PM) comes in. In the course of my presentation, I will share how my involvement in PM as a patient will both help me and others with this disease."
    Jul 22,2022 53:39
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    19. SEASON 1: EPISODE 15 Jan Grimes and Parkinson’s hacks

    For this weeks show sponsored by the Young Onset Parkinson's Network (Yopnetwork.org) on Radio Parkies Webradio at radioparkies.com, listen to the story about inventor Jan Grimes. Jan talks about living with PD and a few Parkinson’s hacks.

    Check out this Davis Phinney video for more Parky hacks

    https://davisphinneyfoundation.org/tips-tricks-and-products-to-manage-parkinsons-symptoms/

    Jul 08,2022 49:50
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    20. Introducing PD Advocate and popular YouTuber Jeremy McDonald

    The Young Onset Parkinson’s Network (YOPN) and radioparkies.com are proud to present the story of a rising personality in the Parkinson’s community, Jeremy McDonald. Jeremy a talented musician initially started a YouTube channel to showcase his music then he was diagnosed with PD. So Jeremy decided to change the focus to spreading awareness and help others with this condition using his wit, and sense of humor all the while being serious when needed. Check out his videos by searching JEREMY MCDONALD ON YOUTUBE
    Jun 25,2022 01:02:20
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    21. SEASON 1: EPISODE 13: Advice from a young onset Parkinson’s advocate and his care partner with Vivek and Chai Puri

    Are you aware there’s an excellent podcast that deals specifically with Care Partner support for women who have a  partner with young onset Parkinson’s?

    It’s called Married2PD (https://www.married2pd.com/)

    Check out the above link to learn more

    Vivek and Chai talk about raising children, communication, agonists, social media and much more

    About Vivek and Chai

    Married for 15 years.

    Living in Northern Virginia with three kids Chai grew up near Boston and is a trained doctor and a licensed massage therapist. She works in Vivek's home building business. She also started and runs Married2PD, an organization focused on providing a place of support for wives of people with YOPD. There is a website, Facebook group, podcast, and a monthly gathering via zoom. She really enjoys gardening and reshuffling furniture and furnishings inside the home over and over again.

    Vivek grew up in Northern Virginia. For the last 16 years he has worked with his father in the family homebuilding business, which sounds like a euphemism for a mafia money laundering operation. Now that his wife also works in the company, he shudders at the thought of giving her a performance evaluation. He was diagnosed with Parkinson's disease 10 years ago, the day after his third child was born.

    New show’s sponsored by the Young Onset Parkinson's Network every Thursday evening at 6:00 EST on radioparkies.com.’

    Jun 10,2022 47:39
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    22. SEASON 1 EPISODE 12: Interview of Jennifer Sullivan founder of you tube channel ”The Wiggles Project” https://www.thewigglesproject.com/

    Have you ever had dyskinesia in a public setting?Then had security walk up to you?Were you alone?Thursday's guest is Jennifer Sullivan and she went through this at a casino in California.Tune in Thursday (5/26/22) to radioparkies.com at 6:00 EST and listen to Jennifer’s story and how she turned a negative situation into a positive outcome called the “Wiggles Project” and spread awareness about dyskinesia and Parkinson's https://www.thewigglesproject.com/
    May 28,2022 01:00:24
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    24. SEASON 1 : EPISODE 10 - JOE GREGORY Diagnosed with Parkinson’s 3 years ago, kicks (Keepy uppys) a soccer ball for 61 miles

    keep·y-up·py

    noun INFORMAL•BRITISH

    a game whose aim is to keep a soccer ball in the air for as long as possible by bouncing it off any part of the body except the hands and arm.

    Thursday (5/12/22) evening on radioparkies.com at 6:00 EST the Young Onset Parkinson's Network (https://yopnetwork.org/) is proud to present the incredible Joe Gregory!

    Gavin Mogan and I speak with Joe who was diagnosed with Parkinson's in 2019 did "Keepy Uppy's" for 61 miles in addition to completing over 13,000 consecutive right in his back yard.

    Joe was a great interview who will keep you inspired, don’t miss this one!

    Check out this video to see a keepy uppy!

    https://www.youtube.com/watch?v=Q7TzBKLL_XY

    May 13,2022 59:08
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    26. SEASON 1: EPISODE 9A: TikTok-er Chris Sutphin talks about mental health and Parkinson’s

    Thursday night 5/5/22 at 6:00 on radioparkies.com we spoke Christopher Sutphin otherwise known as cosmosperfect on TikTok. Chris talks about mental Health and Parkinson’s and https://www.parkie.tv/

    May 06,2022 42:23
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    27. SEASON 1 EPISODE 7: Parkinson’s power couple Karl and Angela Robb

    Tonight at 6:00 EST on radioparkies.com we have two very special people to the Parkinson’s community, Karl and Angela Robb!They share their amazing journey from meeting in an America on-line chatroom through how they stay strong dealing with PD for over 30 years.This is a fun, inspiring interview, check it out, you’ll enjoy.About KarlKarl Robb has had Young Onset Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-five, he is a Parkinson’s disease advocate, entrepreneur, inventor, Reiki Master, and author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and carepartner, Angela Robb. He has blogged for thirteen years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network.About AngelaAngela Robb is Karl’s wife of 25 years, co-editor at ASoftVoice.com, Community Team Member at ParkinsonsDisease.net, and a Reiki Master. Angela has advocated for caregiver issues by sharing her experiences at various regional and national Parkinson’s conferences, writing for the Every Victory Counts manual from the Davis Phinney Foundation, and presenting at the World Parkinson Congress. In 2015, Angela was honored at The White House as a Champion of Change in Parkinson’s Disease.
    Apr 15,2022 01:01:49
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    28. SEASON 1 EPISODE 6: How Tai Chi helped combat debilitating symptoms of Multiple Sclerosis

    PODCAST version of Thursday 4/8/22 EST aired LIVE each Thursday on radioparkies.com we talked with Arlene Faulk.

    Arlene Faulk is a teacher, writer, storyteller and accomplished business woman. After a years-long struggle to understand and conceal debilitating symptoms as she ascended the corporate ladder, a life-changing zigzag led her to find comfort and healing through Chinese medicine and Tai Chi. She discovered her calling with Tai Chi and has been teaching for more than 20 years.

    An award-winning blogger who had a passion for writing from a young age, now Arlene has captured her dramatic personal story in a memoir, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis. Her inspiring story demonstrates how a chronic and debilitating health condition lacks the power to control our lives and stop us from moving in the direction of possibility.

    YOU CAN PURCHASE THE BOOK AT https://arlenefaulk.com/book/

    PANEL INCLUDES

    Ellen Bookman https://laughingmywaythroughparkinsons.home.blog/.../ell.../

    Heather Kennedy

    https://www.kathleenkiddo.com/blog/

    Teresa Jackson

    https://.com/.../parkinsons.../id1541914877

    Apr 08,2022 59:49
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    30. SEASON 1 : EPISODE 4

    Tonight at 6 on Radioparkies.com the Young Onset Parkinson’s Network Podcast (https://yopn.podbean.com/) is proud to present 2-time Stanley cup champion and all-around great guy Shawn Thornton. In this episode Shawn breaks down as he talks about his grandmothers battle with Parkinson’s, his book “Fighting my way to the top”, his foundation (https://www.thorntonfoundation.org/ ) which raises money for Parkinson’s and Pediatric cancer and why he’s worked with the APDA of Massachusetts for 10 years plus much more. Please see attached tribute to Shawn when he played in Boston for 7 years accompanied by the Drop Kick Murphy’s.Happy St. Patrick’s Day!https://www.youtube.com/watch?v=APMuw8drN8cSpecial thanks to Bill Patjane Executive Director of the APDA Northeast for setting everything up.
    Mar 17,2022 50:05
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    31. SEASON 1 : EPISODE 3

    Re-Post from Thursday 3/10/22 on radioparkies.com at 6:00 EST the Young Onset Parkinson’s Network Podcast proudly to spoke with PD advocate extraordinaire Teresa Jackson! Diagnosed in February 2019 Teresa quickly became a tremendous advocate for PD starting with a Mrs. Virginia beauty Pageant where she placed top 10 at 57 years young with Parkinson’s. Next, she authored her book called “Thriving with Parkinson’s – finding Joy after diagnosis” a personal memoir since being diagnosed She didn’t stop there adding a hit Podcast “Parkinson’s Pathway Pals - Tuesdays with Teresa to her resume Today in addition to managing her Podcast, this amazing person is preparing for a bike ride across Virginia (300+ Miles) raising awareness and funds for Parkinson’s research To top it all off she manages to exercise 14-16 hours a week!Catch the LIVE show Thursday's 6:00 on radioparkies.comPODCAST: https://www.buzzsprout.com/1386772FUNDRAISER: https://www.facebook.com/donate/1664174550641619/
    Mar 11,2022 48:32
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    32. SEASON 1: EPISODE 2

    RE-POST from Thursday 3/3/22 show on radioparkies.com at 6:00 pm est Heather Kennedy, new co host Ellen Bookman and I, Interview author Michael Murray about his new book “My Pain-Body Solution” A Journey to the Other Side of Suffering which can be purchased on the website mypainbodysolution.comAbout the bookMICHAEL J. MURRAY’S powerful memoir chronicles his difficult battle to conquer his undiagnosed pain. Murray confides his emotional torment and near collapse as numerous doctors promise relief but only deliver ineffective treatments, contradicting diagnoses, and often dispassionate care. In the end, Murray’s chance discovery in a book on back pain leads to a dawning awareness of the emotional root of his near-constant agony. As he digs deeper into this line of medicine and therapy—and his past—he uncovers the deep connection between mind and body, the healing power of outdoor pursuits and connecting with nature, and the inspiring, innovative methods that can cure physical and emotional pain.But first up we have Gavin Mogan, Russ Parker, Laura Olmos, Eric Slominski and Nathan Lee Ward talk about why they’re going to Oaxaca, Mexico this April starting on the 19th. They’re looking to learn about their PD culture and see where they can help
    Mar 04,2022 01:04:19
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    33. SEASON 1 : EPISODE 1

    RePost from LIVE show, Thursday February 24, 2022 6:00 on radioparkies.com for our first podcast as YOPN "living well starts here" podcast.Tonight we speak with Young Onset Parkinson's Network (YOPN) founder Anna Brown Grill about the latest and greatest updates concerning the YOPN.Also, we speak with board members and fellow Parkinson's fighters Jeremy Likeness and Mark Kohus, they tell their PD story and address why they joined the YOPN board.About today's guests:Anna Grill is the Founder of Young Onset Parkinson’s Network (YOPN). She was on the fast track as a sales executive at a Fortune 200 company, and the youngest and only woman on the executive team when she was diagnosed with Young Onset Parkinson’s Disease (YOPD) in 2007 at the age of 38.Jeremy Likness has been a professional technology and software developer for over three decades. Currently, Jeremy is the Senior Program Manager for .NET Data at Microsoft where his personal mission is to empower developers to be their best. Prior to his current position, Jeremy helped kickstart the technology and software development efforts for several startups that ultimately grew into multi-million and multi-billion-dollar corporations.YOPN board member, Mark C. Kohus, is a Senior Vice President and Group Manager with Fidelity Investments. With more than 24 years of experience working in the financial services field, Mark has held a variety of leadership roles including project management, relationship management and supporting operations.
    Feb 25,2022 51:32

YOPN’s Living Well Starts Here

Join us as we chat with members of the YOPD community Disease, care partners and experts in the YOPD field to learn more about this neurodegenerative disease and those living with it.

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