2 Mikes Parkinson’s Podcast

In this Episode we spoke with Andrea Merriam, CEO and Anissa Mitchell, LCSW, Chief Program Officer of the PMD Alliance about the ALL IN summit

The ALL IN summit was held October 22-25 in Washington DCThis national in-person summit gathered community + support group leaders and allies from around the country, convening prospective leaders, newbies, and veterans to connect, collaborate, and embrace the magic that happens when we come together to learn.

About the PMD alliance

PMD Alliance is a 501c3 nonprofit organization dedicated to educating, empowering, and connecting people with movement disorders, their families, and the healthcare providers and community members who care for them.

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

"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

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 organised 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.

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

The American Parkinson Disease Association (APDA) Massachusetts Chapter is thrilled to announce it will host the region’s first ever APDA MA Magic of Hope Gala next month. The event will take place on Friday, November 4, from 6:30 to 10:30pm, at the Newbury Boston. Event chair Allison Goldberg (Saker) and committee welcome all to this evening of dinner and dancing to support the APDA, which provides local, grassroots resources to people impacted by Parkinson’s in Massachusetts. More than 200 guests from the Greater Boston area will attend, many of whom have been touched personally by Parkinson’s.  Guests will enjoy a cocktail hour and silent auction followed by dinner, dancing and a live auction. The glamorous backdrop for these festivities will be the iconic and newly restored Newbury Boston in Back Bay (www.thenewburyboston.com/). Tune in as we speak withBill Patjane Northeast Regional director of the APDAAllison Goldberg (Gala Lead)Caroline Baltz (Friend and Business partner of Allison)https://www.apdaparkinson.org/community/massachusetts/upcoming-events-ma/moh/

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"

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

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

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