November 22, 2022
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 DC
This 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.
November 7, 2022
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
October 31, 2022
"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
October 25, 2022
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.
October 10, 2022
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=3356
She's here to talk about the benefits that Vestibular training has for people with Parkinson's
October 10, 2022
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 with
Bill Patjane Northeast Regional director of the APDA
Allison Goldberg (Gala Lead)
Caroline Baltz (Friend and Business partner of Allison)
https://www.apdaparkinson.org/community/massachusetts/upcoming-events-ma/moh/
September 27, 2022
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"
September 6, 2022
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
August 29, 2022
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.
He also has a Facebook Group for Parkinson’s Awareness that can be found at MarkInThePark21 in the “Groups” section of FB.
