YOPN’s Living Well Starts Here

Call on the Fighter

Call on the Fighter" began as a simple idea...create and offer original music to encourage and inspire "fighters" along their Parkinson's journey. Colleen Bridges, owner, and director of Bridges for Parkinson's found the perfect fit in one of her own fighters, Rich Gootee. Rich, an award-winning singer/songwriter, knows all too well the constant and daily struggles as he was diagnosed with Parkinson's disease in 2018. Colleen's experience, research, and regular boxing classes have helped Rich and many others discover the fight within themselves to overcome the otherwise debilitating effects of Parkinson's disease. Together, Colleen, Rich, and their team have grown the music idea into an effort to help even more fighters find restoration and hope by raising funds so that nobody will ever have to be turned away from their local program. Please check out more information about our project and consider purchasing our song at www.callonthefighter.com.
Thank you for watching!  https://www.youtube.com/watch?v=rq6onvFOC9Y
Song Written and performed by Greg Anderson and Rich Gootee

The woman who can smell Parkinson’s

The woman who can smell Parkinson’s
Joy Milne’s husband Les was diagnosed with Parkinson’s at the age of 45. However, it had been 12 years earlier when Joy had first noticed that something was different about him.
Joy has a rare condition called hereditary hypersomnia that gives her a heightened sense of smell. When Les was 33, she noticed that he had started to develop an odor, which she described as a subtle, musky smell.
She also noticed the same distinct smell when attending meetings organized by the charity Parkinson’s UK. It was at this point that she was able to link the smell to the disease.
 Joy’s ‘super smeller’ abilities would soon go on to make headlines around the world, and along with researchers, they're changing the landscape of diagnosing Parkinson's.

Vestibular Training for Parkinson’s with Sheila Thelen

Sheila Thelen, owner of Vestibular Training Services LLC (VTS), is a National/International/Master Figure Skating Coach & Worldwide presenters at International Conferences & Events. (She is a Vestibular GENIUS - working with thousands of athletes & kids & rehabilitation groups throughout the world.)https://vestibulartrainingservices.com/web/index.php?siteid=420&pageid=3356She's here to talk about the benefits that Vestibular training has for people with Parkinson's

Eli Pollard and the WPC in 2023 plus Alison Miller of Supernus Pharmaceuticals

Today's guests include Eli Pollard and Alison Miller
Elizabeth “Eli” Pollard is the Executive Director of the World Parkinson Coalition (https://www.worldpdcoalition.org/) talks about many subjects including the WPC in 2023 being held in Spain. She also discusses the "Parkinson's Tulip Project" what it's about and how to enter. Travel grants and much more!
Alison Miller, Strategic Partnership Manager with Supernus Pharmaceutical (https://www.supernus.com/commercial-products), talks about building relationships within the Parkinson's Community and the drugs offered by Surpernus to help "on time" as well as the "Parkinson's Tulip Project"

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 series
Special 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 medical
management 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 wellness
Many 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 DIAGNOSIS
Bo 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
 

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/706326801
Password: Password: Lemond19898xii

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 boom
Mark 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/markinthepark21
He 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

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.
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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.

Keri Shaw tells her story about how sobriety helped her manage Parkinson’s

About Keri:
Dedicated single mama to 2 amazing girls. Keri has had a long career in pharmaceuticals and geeks out reading anything she can that has to do with research and science.
Keri is an avid athlete, starting early as a competitive gymnast and later fell in love with all things running. After being diagnosed with young onset Parkinson’s, Keri knew from her prior experience with recovery and sobriety that in order for her to continue to show up for life that she would need to find her people and build a village. The positive approach she takes on living with YOPD allows Keri to keep pushing forward despite living with Parkinson's

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."