In this episode of "When Life Gives You Parkinson's," Larry Gifford and Rebecca Gifford delve into the world of Deep Brain Stimulation (DBS), continuing their 2023 series on this treatment option. While sharing their optimism about Larry's upcoming DBS surgery, they also address the importance of discussing the risks associated with it. They present real stories from individuals who've undergone DBS, shedding light on the complexities and varied experiences associated with this treatment. Kim Cornelis shares her personal journey, highlighting both the potential benefits and challenges of DBS. The episode also explores alternative treatments, like light therapy, and emphasizes the significance of open communication about the emotional and psychological impact of DBS, including discussions about suicidal ideation.
Join Larry and Rebecca as they provide valuable insights and a balanced perspective on the choices facing individuals with Parkinson's disease. They emphasize the importance of well-informed decisions, emotional support, and understanding within the Parkinson's community. The podcast aims to raise awareness about the mental health aspects of living with Parkinson's and undergoing treatment.
If you have no one to talk to about your suicidal thoughts, call your country's suicide hotline.
INTERNATIONAL SUICIDE HOTLINES
In Canada, it's 1-833-456-4566.
In the U.S. Dial 988.
In Australia, 131-114.
And in the UK dial 0800 689 5652.
KEY LINKS
Thank You to:
Kim Cornelis, PwP, Portland, Oregon
Becca Miller, PhD, PwP
Parkinson’s Resources of Oregon
Dr. Wayne Markman, founder & CEO of Symbyx Biome
If you have no one to talk to about your suicidal thoughts, call your country's suicide hotline.
INTERNATIONAL SUICIDE HOTLINES
In Canada, it's 1-833-456-4566.
In the U.S. Dial 988.
In Australia, 131-114.
And in the UK dial 0800 689 5652.
MAIL Larry and Rebecca:
[email protected]
Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
October 4, 2023
In this episode of "When Life Gives You Parkinson's," Larry and Rebecca dive into Larry's upcoming Deep Brain Stimulation (DBS) surgery. They introduce Dr. Chris Honey, the neurosurgeon who will perform the procedure the brain surgeon. Dr. Honey breaks down what to expect and the possible risks of DBS, stressing the importance of picking the right surgeon and keeping a positive mindset. After the surgery, the plan is to use the DBS device to replicate Larry's best moments on medication, with the hope of eventually cutting down or even ditching the meds. The episode also brings in Tim Hague Sr., who shares his experience with the medication challenge, underlining just how much Levodopa (medication) can make a world of difference for folks dealing with Parkinson's. The podcast wraps up with a chat about making essential medications accessible worldwide and some cool facts about DBS.
Check out these videos of Larry's OFF CHALLENGE
My Eye Opening DBS "Off Challenge" https://youtu.be/GrlCmrHbtb0?si=PGRaESoYWMt4L5Uc
The Power of Levodopa https://youtu.be/Mg91r2hT6p4?si=xFgVhnCSiRX8haLZ
Thank You to:
Neurosurgeon Dr. Christopher Honey www.DrHoney.com
Nurse Nancy at the Vancouver Coastal Health DBS Clinic
Tim Hauge Sr. www.TimSr.ca founder of www.uturnparkinsons.org www.pdavengers.com
TV Show House Heel & Toe Films Shore Z Productions Bad Hat Harry Productions Moratim Produktions NBC Universal Television (2004-2007) Universal Media Studios (UMS) (2007)
The Brain Surgeon - That Mitchell & Webb Look , Series 3 - BBC Two
MAIL Larry and Rebecca:
[email protected]
Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Twitter: @ParkinsonsPod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
September 20, 2023
Hosts Larry and Rebecca Gifford are preparing for Larry's DBS surgery scheduled for October 24, 2023. During the evaluation for DBS surgery. Larry needed to completely go off meds for at least 12 hours. The medical team tests motor symptoms while OFF levodopa and then after taking a dosage and waiting forty minutes repeat the tests. Evaluators were looking for a 40% or more difference in my motor symptoms from OFF to ON. It was truly revelatory to see just how much levodopa, the medication commonly used for Parkinson's, impacts daily life.
MAIL Larry and Rebecca:
[email protected]
LEAVE US A MESSAGE: Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
WATCH: Here is a link to see a comparison of Larry ON Levodopa and OFF levodopa
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to
PD Avengers – We are building a global alliance to end Parkinson’s. Join us. www.pdavengers.com
September 8, 2023
Donate to the World Parkinson Coalition to support this and future World Parkinson Congresses.
World Parkinson Congress 2023 (WPC2023) was a true testament to unity and shared vision. It saw the participation of more than 2,600 people, drawn from 73 countries, all converging under one roof with one common objective: unraveling the mysteries of Parkinson's. This assembly comprised nearly a thousand medical doctors and researchers, 450 registered nurses, therapists, and other clinicians, 685 brave individuals living with Parkinson's, and 260 dedicated care partners and family members.
In this episode, Larry and Rebecca share their experiences and discuss some of the most poignant lessons, enlightening stories, and groundbreaking revelations from the congress. They will introduce you people making a difference in their local communities and the world stage.
KEY LINKS
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Tight Rope Theatre Improv for Parkinson’s – Sign up NOW for fall classes “Improv for Parkinson’s” – no experience necessary.
The PwP Improv Players
Arne Johansen
Clara Kluge
Larry Gifford
Miriam Bram
Peter Jarvis
Shabbir Latif
Dan Dumsha, Director -- Improv for Work & Wellness
Rosemary Morrison – Improv for Wellness Coordinator
Donate to help support the Amazing Rosemary who organized the Improv for Parkinson’s troupe and found a theatre for us to perform in while in Barcelona.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress
WHO iSupport
Thanks to:
Julie Worden, Brooklyn, NY Dance for PD
Jane Williams London, KY Parkinson’s in Motion
Amy Lavalle, Brian Grant Foundation www.briangrant.org
Geoff Constable, Melbourne, Australia www.fightparkinsons.org.au
WLGYP: What's your superpower?
Tina Gillespie, South Australia, Australia Parkinson’s South Australia
Craig Gillespie, South Australia, Australia Parkinson’s South Australia
Sheena Botrill – South Australia, Australia Parkinson’s South Australia
Eric Aquino, Eastern Pennsylvania Gray Strong Foundation – Trembling EMT Podcast
Dr. Tash (Natasha) Fothergill-Misbah Newcastle University
Joy Milne, Ted X Manchester This Nurse Can Smell Parkinson’s Disease
WLGYP: A 3-minute test for a Parkinson’s diagnosis
WLGYP: World Parkinson Congress – Day 2 (Kyoto)
Paul Mayhew Archer Incurable Optimist
WLGYP: They say laughter is the best medicine
Donate to the World Parkinson Coalition to support this and future World Parkinson Congresses.
MAIL Larry and Rebecca:
[email protected]
Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
August 4, 2023
Larry & Rebecca Gifford dive into the growing interest and research being conducted around red light and infrared light laser therapy for Parkinson’s disease. In Hamilton, Ontario PD Avenger and care partner Lorna Dueck, a retired radio and TV host, visits Gaitway Physical Therapy. She interviews physiotherapist Orla Hares and research assistant Jenna Sykes. Intrigued, Larry tracks down the CEO of Symbyx Biome, Dr. Wayne Markman of Australia, to discuss the handheld laser being used on the gut and vagus nerve and the infrared helmet – both designed to reactivate the mitochondria inside the dopamine cells.
and learns more about the research, science and tradition of therapy of light which dates back to Florence Nightingale in the 1850s.
KEY LINKS
Symbyx Biome https://symbyxbiome.com/en-ca
CEO Wayne Markman featured in Forbes Australia
· Find out how this Australian med-tech company is tackling Parkinson’s disease
Gaitway Physical Therapy https://gaitwayneurophysio.com/research/
Lorna Dueck https://lornadueckcreative.com/
· Context Beyond the Headlines: Lorna Dueck’s journey through Parkinson’s with her beloved Vern. Her final appearance as host of the TV Show featuring PD Avengers founders Soania Mathur, Tim Hague Sr, and Larry Gifford.
APDA Light Therapy for Parkinson’s Disease
MAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s landmark study Parkinson's Progression Markers Initiative (PPMI)
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
May 31, 2023
The banner headline on the homepage of the Michael J. Fox Foundation’s website reads “Breaking News: Parkinson’s Disease Biomarker Found.” It sounds exciting, but what does it really mean?
Debi Brooks, CEO and cofounder of The Michael J. Fox Foundation, joins Larry Gifford for a chat about what she says is the most important finding the Foundation has discovered in its history. It is already changing the way researchers recruit for some studies. It will lead to faster diagnosis, more customized and personalized treatment, faster, cheaper, more targeted pharmaceuticals, and ultimately it is another step closer to stopping Parkinson's in its tracks.
Important Links
The Lancet Neurology Article
The Michael J. Fox Foundation Coverage of the Biomarker
PPMI: The Study That's Changing Everything
STAT Article featuring Michael J. Fox's reaction
Michael J. Fox Op-Ed for STAT
The Presenting Partner is Parkinson Canada... where people with Parkinson’s are at the centre of everything they do. Parkinson Canada funds critical research, provides information and support, increases awareness and advocates for improved healthcare outcomes for people with Parkinson's across Canada. Learn more at Parkinson.ca
Thank you to our promotional partners
Spotlight YOPD
PD Avengers
World Parkinson Congress 2023 in Barcelona
April 19, 2023
Trichloroethylene (TCE). You cannot see it or smell it. It could be in the air you breath, the water you drink, and the food you eat. It is a carcinogen and is linked to clusters of cancer and Parkinson’s. In Journal of Parkinson’s Disease, Dr. Ray Dorsey at the University of Rochester and eleven colleagues have published a research article asking the question “Is Trichlorethylene an invisible cause of Parkinson’s?” The authors go on to make a convincing case.
Dr. Dorsey joins the podcast to explain the dangers of TCE, how it seeps into ground water, your home, schools, and office buildings, how to protect yourself, and where you can look to see if a TCE Superfund site is near where you live.
KEY LINKS
BOOK: ENDING PARKINSON’S DISEASE; A PRESCRIPTION FOR ACTION
JOURNAL OF PARKINSON’S DISEASE (SCIENTIFIC JOURNAL)
Trichloroethylene: An Invisible Cause of Parkinson’s Disease?
THE GUARDIAN (UK)
Rates of Parkinson’s disease are exploding. A common chemical may be to blame (TCE)
Secret files suggest chemical giant feared weedkiller’s link to Parkinson’s disease (Paraquat)
NEW YORK NEWSDAY (NY/USA)
A NEWSDAY INVESTIGATION: The Grumman Plume; Decades of Deceit
CBS MORNING (USA)
Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades later
LOS ANGELES TIMES (CA/USA)
Is a common industrial chemical fueling the spread of Parkinson’s disease?
THE TORONTO STAR (ON/CAN)
Dry cleaning chemical linked to Parkinson’s in international study (2011/Canada)
DAYTON DAILY NEWS (OH/USA)
VOICES: How toxic industrial spills have contaminated our groundwater
EPA FACT SHEET | TRICHLOROETHYLENE EPA SUPERFUND HOME PAGE WIKIPEDIA
CANADIAN FEDERAL CONTAMINATED SITES INVENTORY (FCSI) CONTAMINATED SITES HOMEPAGE
Much gratitude for your content
A Civil Action: Touchstone Pictures, Paramount Pictures, and Wildwood Enterprises, Inc
SaferChemicals on YouTube WATCH “TOXIC CHEMICAL LOBBY: EXCLUSIVE LEAKED FOOTAGE”
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s landmark study Parkinson's Progression Markers Initiative (PPMI)
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
March 29, 2023
Lithium is more than a drug, it’s the third element on the Periodic Table of Elements. Symbol is LI. It’s lightest metal known to mankind. Lithium-ion batters are used in electric cars. Lithium is also present in vaping devices, many personal electronics such as cell phones, tablets, and laptops, E-Bikes, electric toothbrushes, tools, hoverboards, scooters, and for solar power backup storage. Its origins can be traced back to the Big Bang.
For 70 years it’s successfully been used to treat bi-polar disease. Now there’s hope it could be game changing for Parkinson’s disease. Tom Guttuso Jr., MD is a professor of Neurology at the University of Buffalo and Co Director of the Movement Disorder. His new book, titled the Promise of Lithium: How an Over-The-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease.” Dr. Guttuso joins the pod to discuss the potential of Lithium and stopping Parkinson’s.
Much Gratitude for your music:
Nirvana Lithium
Evanescence Lithium
Pink We’ve Got Scurvy from the album Sponge Bob’s Greatest Hits
The Steve Miller Band Fly Like an Eagle
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
BOOK: The Promise of Lithium: How an Over-the-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease
Thanks to Curiouscast
Dila Velazquez – Story Producer
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s Parkinson’s IQ + You Events
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
February 1, 2023
January 17 marks the 81st anniversary of the birth of one of the greatest Parkinson’s advocates of all time, Muhammad Ali. In this episode, we learn more about the champ’s journey from his eldest daughter Maryum “May May” Ali – the stigma her father dealt with after his diagnosis, when she first noticed changes in her dad, struggles with speaking and medication, and how he improved his quality of life.
In addition to exploring Ali’s Parkinson’s legacy, Dr. Michael S. Okun, the head of neurology for the University of Florida Norman Fixel Institute for Neurological Diseases, sheds light on Ali’s PD diagnosis. Okun and two other neurologists, the final three neurologists to treat Ali over the course of many years, published an article in October 2022 to clear up misinformation about his diagnosis. Ali was a young onset Parkinson’s disease patient that responds to Levodopa which is different if his Parkinson’s onset due to his boxing career and punches to the head.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
Maryum “May May” Ali - website
RESOURCES
Muhammad Ali and Young-Onset Idiopathic Parkinson Disease—The Missing Evidence
Thanks to Curiouscast
Dila Velazquez – Story Producer
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s Parkinson’s IQ + You Events
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
January 31, 2023
One of the dark symptoms of Parkinson’s is apathy. Describing apathy is a bit like describing what it feels like when a dementor in the Harry Potter books kisses a character – the ability to drain happiness and hope from its victims. When a person with Parkinson’s spirals into a an apathetic state they lack motivation and lose interest in activities they used to enjoy. To experience apathy is like being in a bubble of indifference. You stop caring about yourself or other people in your life with a total void of emotion.
In this episode we hear firsthand from Jeff and Kristin Krantz what it’s like as a person with Parkinson’s living in a apathetic state and how it impacts the care partner and others in the family. Dr. Bradley McDaniel offers advice on how to escape apathy through pursuit of your meaning in life.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
Dr. Bradley McDaniels https://hps.unt.edu/bradley-mcdaniels-phd-crc
Resources Mentioned
Ending Parkinson’s Disease book by Ray Dorsey MD, Michael Okun MD, Todd Sherer PhD and Bas Bloem MD, PhD
Man's Search for Meaning by Victor Frankl
The Spirituality of Imperfection Storytelling and the Search for Meaning by Ernest Kurtz and Katherine Ketchum
Jeff & Kristen Krantz
Thanks to Curiouscast
Dila Velazquez – Story Producer
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s Parkinson’s IQ + You Events
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
November 23, 2022
When John O’Leary was a nine-year-old boy, he was burned on 100% of his body. He was in his garage playing with matches and gasoline—just like he’d had seen the older boys on his block do. A fire exploded, consuming the garage, sending him flying back against the wall and turning his whole world upside down. He talks with Larry & Rebecca about how he was given 1% chance to live. Now, 36-years later, John is living an inspired life. He has two national best-selling books “On Fire” and “In Awe.” he’s a podcast host, an in-demand international speaker and is someone who intimately understands the impact that Parkinson’s can have on a family.
Email Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea?
We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
John O’Leary Website www.JohnOLearyInspires.com
Live Inspired Podcast https://johnolearyinspires.com/podcast/
· Episode featuring Larry & Rebecca Gifford and When Life Gives You Parkinson’s
Books
· On Fire: The 7 Choices to Ignite a Radically Inspired Life
· In Awe: Rediscover our childlike wonder + unleash inspiration, meaning and joy.
Facebook @JohnOLearyRisingAbove
Instagram @joholeary.inspires
Linked In @John-O-Leary-08b2805
Twitter @JOLearyInspires
Thanks to Curiouscast
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation’s Parkinson’s IQ + You Events
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
November 2, 2022
Kat Hill and Nancy Peate are the authors of Being Well with a Chronic Illness: A Guide to Joy and Resilience with Your Diagnosis. In their book they offer wisdom, language, research-supported guidance and personal stories to help people with Parkinson’s and other chronic conditions navigate their wellness journey. In this episode, Rebecca talks with the authors — who also happen to be good friends — about their own experiences with Parkinson’s and how they have cultivated tools to find joy and resilience. Larry and Rebecca also discuss and offer their reactions to the book.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
Being Well with Chronic Illness: A Guide to Joy & Resilience with Your Diagnosis
by Kat Kill and Nancy Peate (Paperback and e-Book)
Penguin Random House United States US$18.00 Canada C$23.00 Australia A$32.99
WHSmith (UK) United Kingdom £15.63
PD Lemonade – Kat Hill’s podcast
VIDEO: Advocacy Pyramid ARTICLE: Tom Isaac’s Advocacy Pyramid explained from Grand Challenges 2014
Women’s Parkinson’s Project
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
October 19, 2022
Geoff Constable is a PD Avenger and an Ambassador for the World Parkinson Congress 2023 in Barcelona. We met at the last WPC2019 in Kyoto. Like many of us with YOPD, Geoff’s diagnosis was delayed six years as doctors tried to figure out root issue of his symptoms. In 2008, at the age of 50, he finally was able to put a name to the issues he had, Parkinson’s disease.
Geoff spent his teen years sleeping on friends couches and sometimes living on the street. He earned a degree in Naval Architecture and designed 16 Ships for the Royal Australian Navy and spent countless hours battle testing the ships in extreme conditions.
At 44-years old he talked to his doctor about onsetting symptoms. It took six years to diagnose him with Young Onset Parkinson’s. He was happy to have a name for it, but bummed because there was no cause, no cure, and no standard disease path.
Listen to how Geoff took his diagnosis of Parkinson’s and discovered his own superpowers on how to incorporate and accept it. Using his own body as vessel, he put himself through battle testing and discovered he was capable of far more than he or his doctors believed possible.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
WPC2023 Registration and Hotel
Geoff Constable’s blog
VIDEO: Geoff Constable’s 2022 Moomba performance
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
October 12, 2022
Updates on several stories we’ve shared on the podcast. Reactions to the three-minute test to diagnose Parkinson’s. The final 30km on a cross-country bike tour for Parkinson’s leaves bikers spinning their wheels. * We catch up with the Rigid Riders. Plus, Ozzy Osbourne on stage for the first time since his Parkinson’s diagnosis. *Don’t forget to push the donut button.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
Spinning Wheels - www.spinningwheelstour.ca
Spinning Wheels – YouTube: https://www.youtube.com/channel/UCR1_sRarZ_nt6neUqAXNMPw
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
University of Manchester
Jim Redmond
Steve Iseman
Mike Loghrin
Darlene Richards-Loghrin
BBC Sport
“The Talk” on Talk TV Network
And YOU!
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
September 22, 2022
This is a breakthrough, breaking news episode featuring Professor Perdita Barran, University of Manchester and Joy Milne, the woman who can smell Parkinson’s. Today. their latest research paper was published at 12:01am (BST) September 7, 2022. This research has led to a three-minute non-invasive test to determine a positive or negative Parkinson’s diagnosis. Clinical Research will begin within two years at University of Manchester and has the potential to be approved as a diagnostic tool for neurologists before the end of the decade.
LISTEN TO JOY MILNE in previous episodes
June 05, 2019 The Woman Who Can Smell Parkinson’s | World Parkinson Congress | Kyoto
October 20, 2019 The Smell of Parkinson’s
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
September 7, 2022
Communication is vital for all parts of life, but Parkinson’s disease can greatly impact cognition and speaking.
That’s where a speech and language pathologist comes in - helping with common problems like drooling, swallowing, concentration and talking.
In this episode, we hear from a speech and language pathologist about different ways to improve communication and swallowing difficulties after diagnosis.
We also hear from people with Parkinson’s disease about what it’s like to live with these challenges, and what adaptations have been most helpful in overcoming them.
For more links and resources, visit our website at HealthUnmuted.com
Resources
Voice and swallowing support
Speech Therapist finder - Parkinson’s voice project
LSVT Program Finder
Live Home Practice Sessions - Parkinson’s Voice Project
Speech & Swallowing Issues - Parkinson’s Foundation
Adaptive Tools
Pocket talker device - Amazon
Community Groups:
Choirs improving PD symptoms
PD Avengers
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
September 6, 2022
Food is an important part of everyone’s life. Adjusting your diet while managing a chronic illness can be a challenge.
In this episode, we speak to a dietician about the foods and diets that are often recommended for people with Parkinson's.
We also hear about tips and tools to make cooking and eating a little easier, especially while experiencing motor and non-motor symptoms.
For more links and resources, visit our website at HealthUnmuted.com
Resources
Diet and nutrition
Guide to eating a Mediterranean diet - Michael J Fox Foundation
Meal time booklet - Parkinson’s Foundation
Information of pro and prebiotics - Parkinson's Foundation
Common symptoms
Studies to show constipation as common symptom of Parkinson’s disease - Study 1 and Study 2
Webinar on gut related issues in Parkinson’s Disease - Michael J Fox Foundation
Adaptive Tools
Swivel Spoons - Various types available on Amazon.com
Lift steady table ware - Product website
Wrist weights - Various types available on Amazon.com
Weighted bracelet - Product website
Podcast
When Life Gives You Parkinson’s Podcast
Acid reflux podcast
Community Group
PD Avengers
A transcript of this episode is available here.
The Parkinson’s Disease Podcast is made possible with support from Altoida.
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
Note: Links and resources provided are for informational purposes only. There is no commercial relationship between the organizations referenced and the publisher of this podcast
September 6, 2022
When it comes to slowing down the progression of Parkinson’s disease, exercise is critical. But you don't need to be a lifelong athlete to benefit.
In this episode, we hear why exercise is so important, and some easy ways people living with Parkinson’s can get started today.
We also cover the importance of physical and occupational therapy, and hear tips on how home adaptations can help manage symptoms.
For more links and resources, visit our website at HealthUnmuted.com
Resources
The benefits of exercise
Study to show exercise improves depression in Parkinson’s patients
Benefits of exercise for slowing parkinson’s disease - Parkinson's Foundation
Downloadable resources on benefits of exercise for PD - Stanford Medicine
Why you should exercise - Parkinson’s Foundation
Terms Mentioned:
GERD, Gastroesophageal reflux disease - Mayo Clinic
Exercise guides
Skills and Wellness channel - Youtube - Mobility videos
Parkinson’s foundation - Youtube - Fitness Friday videos
Step by Step Physio Movements - Parkinson’s Wellness Recovery
MENTOR Program
Exercise videos - Brian Grant Foundation
Home Adaptations
Easy changes to make around the house - Davis Phinney Foundation Video
Bathroom and grooming aids - Parkinson’s Foundation
Webinar on creating a safe home environment - Parkinson’s Foundation
Podcast
Parkinson's Podcast by the Davis Phinney Foundation
Community Group
PD Avengers
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
September 6, 2022
There's no cure for Parkinson's disease, but there are ways to manage it and treat symptoms.
In this episode, we explore how different types of medications can help, and the importance of clinical trials in progressing treatment options.
We hear from people who are living with Parkinson’s disease about their medication journeys.
We also discuss an alternative surgical treatment that is available: deep brain stimulation.
For more links and resources, visit our website at HealthUnmuted.com
Resources
Medication
Medication explained - Mayo Clinic
Webinar about on/off time - Michael J Fox foundation
Parkinson’s Drugs- Parkinson’s UK Resource
FDA Approved Medications- APDA
Terms Mentioned
Carbidopa-levodopa - Mayo Clinic
Sinemet, Parcopa, Duopa and other brand names for Sinemet - on Medscape
Dopamine agonists (pramipexole, ropinirole) - Mayo Clinic
Dyskinesia- Parkinson Foundation
Deep Brain Stimulation - Mayo Clinic
Alternative Surgical Treatment Option
Deep Brain Stimulation - Parkinson's Org
Clinical Trials
Clinical Trials- Parkinson’s Foundation
Clinical Trials Recruiting- Cure Parkinsons
Podcasts
Parkinson's Foundation Podcast
Community Group
PD Avengers
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
September 6, 2022
Does Parkinson’s only affect older people?
A common misconception is that Parkinson’s disease only affects people in the later stages of life, but that isn’t always the case.
Young-Onset Parkinson’s disease refers to people who are diagnosed much earlier, sometimes in their 20’s or 30’s.
In this episode, we hear from three people who are living with Young-Onset Parkinon’s disease about their experiences, and the impact on and adjustments to their careers, health decisions and family life after diagnosis.
For more links and resources, visit our website at HealthUnmuted.com
Resources
Talking about Parkinson's
Talking to your Children about Parkinson’s - Michael J Fox Foundation
My parent has parkinson’s fact sheet - Parkinson’s Foundation
Talking to your employer about PD - Parkinson’s Foundation
Terms from this Episode
Hand Dystonia : "excessive, involuntary muscle contractions in the fingers, hand, forearm, and sometimes shoulder" - Dystonia Foundation
Podcasts
Learning About Parkinson's Podcast
Young Onset 101 podcast episode - Parkinson’s Foundation
Parkinson's Life Podcast
Community Group
PD Avengers
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
September 6, 2022
Parkinson’s disease can’t be diagnosed through a simple blood test or scan. After a referral from a primary care doctor, it often takes visits to a neurologist or movement disorder specialist before receiving a clinical diagnosis.
In this episode, we speak to healthcare providers and those living with the disease about the diagnostic process. We also explain how to build a Parkinson’s care team - a group of healthcare providers that provide support after diagnosis.
For more links and resources, visit our website at HealthUnmuted.com
Resources
Building a care team
Movement disorder specialist directory - International Parkinson’s and Movement Disorder Society
Find a PD expert care center - Parkinson’s Foundation
Building a care team - Michael J Fox Foundation
Support after diagnosis
Early signs of PD- Brain and Life Magazine (AAN)
Guide to the early years after diagnosis - Michael J Fox Foundation
Terms Mentioned
DaTscan - test to help in the diagnosis of Parkinson’s, read more on APDA
Podcast
The Michael J Fox Foundation Parkinson’s Podcast
Community Group
PD Avengers
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
September 6, 2022
The World Health Organization reports that the number of people with Parkinson's disease has doubled over the past 25 years, estimating over 8.5 million individuals living with Parkinson's globally. (1)
Parkinson’s is a degenerative condition which is often associated with tremors, imbalance and rigidity, but it affects every person differently.
In this first episode of the Parkinson’s Disease Podcast, we’ll start with the basics:
What is Parkinson’s Disease?
Who is at risk of developing Parkinson’s?
What are some early signs of the condition?
We’ll also hear what it’s like to live with Parkinson’s disease from those diagnosed.
For more links and resources, visit our website at HealthUnmuted.com
What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know!
Resources
What is Parkinson’s?
Webinar on recognising the early signs of Parkinson’s - Parkinson’s Foundation
Other parkinsonion conditions - Parkinson’s Foundation
Genetic causes of Parkinson’s - Michael J Fox Foundation
Webinar on sleep disorders and acting out dreams - Michael J Fox Foundation
Terms Mentioned
Dopamine - WebMD
Tremor and Resting Tremor - Parkinson's Foundation
Rapid eye movement (REM) sleep behavior disorder - Mayo Clinic
Olfactory nerve - nerve relating to the sense of smell
Hoehn & Yahr staging - Parkinson's Foundation
Axial symptoms - these include symptoms such as walking disorders, posture disorders, and speech and swallowing disorders
Helpline
Parkinson’s Foundation Helpline - 1-800-4PD-INFO (473-4636)
Podcast
Substantial Matters: Life and Science of Parkinson’s Podcast
Community Group
PD Avengers
Guests’ Books
Ending Parkinson’s Disease: a Prescription for Action by Ray Dorsey MD, Todd Sherer PhD, Michael S. Okun MD and Bastiaan R. Bloem MD PhD
References
(1) https://www.who.int/news/item/14-06-2022-launch-of-who-s-parkinson-disease-technical-brief
A transcript of this episode is available here.
This episode is made possible with support from Altoida.
September 6, 2022
Dave Iverson was diagnosed with Parkinson’s in 2004. He is a founding member of The Michael J Fox Foundation (MJFF) Patient Council and was the first host of the MJFF Parkinson’s Podcast. We caught up at a patient council meeting in New York City to chat about his new book “Winter Stars.”
Parkinson’s runs deep in Dave’s family, but this book is not strictly about Parkinson’s. It’s about family, life choices and a bone between a mother and son.
At the age of 59, having spent nearly forty years in public broadcasting, Dave paused his career. His 95-year old mother had a rough bout with pneumonia and couldn’t care for herself anymore. So, he paused his career, moved in with her and became her caregiving.
That decision resulted in a decade of self-discovery, an odyssey that forced Dave to come face to face with his personal weaknesses and uncharacteristic anger, while strengthening the bond to his mother and learning to live with, learn from and love dementia.
Winter Stars by Dave Iverson is available wherever you buy your books.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
“Winter Stars” by Dave Iverson – Sample Chapters, Listen to an Excerpt, Read Reviews, and Purchase
My Father, My Brother and Me – Watch Dave Iverson’s FRONTLINE documentary online.
Capturing Grace – Homepage for Dave Iverson’s film about Parkinson’s and Dance.
Care Partner Resources
PARKINSON CANADA
Care Partnering Home Page – Access the free care partner book, self-assessment guide, care partner burden calculator, home safety evaluation, activities of daily living, daily needs and routine tracker, Parkinson’s disease daily diary, and a “What-if” planning tool.
MICHAEL J FOX FOUNDATION
Care Partner Guide – “You, Your Loved One and Parkinson’s Disease” FREE DOWNLOAD from The Michael J Fox Foundation
Caregiving and Parkinson’s “Ask the MD” – The Michael J Fox Foundation’s Dr. Rachel Dolhun offers insight and advice to Care Partners in this four-minute video.
PARKINSON’S FOUNDATION
Care Partner Resources – Early in the Journey to Advanced Parkinson’s, getting outside help, Hotlines, government agency contacts, medication and financial assistance, and end of life planning.
AMERICAN PARKINSON’S DISEASE ASSOCIATION (APDA)
Care Partner Resources
PARKINSON’S UK
Care Partner Resources
European Parkinson’s Disease Association (EPDA)
Caring and Parkinson’s Resource Page
WRITING WORKSHOP
Tightrope Theatre - Rebecca Gifford’s online virtual writing workshop “Express Yourself” is open to everyone from anywhere. The six-week course begins in September 2022 and is open for registration through Tightrope Theatre.
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
August 24, 2022
SUMMARY: In the book, “Mary & Me,” author Robyn Cotton draws upon her own experiences with Parkinson’s in a fictional novel based in contemporary times and early 1800’s London, England when Dr. James Parkinson was roaming the streets and noticing a condition, he called shaky palsy. Not often does Parkinson’s play such a key role in a fictional piece of work, Robyn’s journey grounds the book in near-real experiences as she and her characters struggle with the degenerative brain disease.
EMAIL Larry and Rebecca:
[email protected]
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
“Mary & Me” by Robyn Cotton – Buy it on Amazon
The BC Brain Wellness Program
Tightrope Theatre – “Playing with Words” workshops and the more intense “Express Yourself” six-week course with Rebecca Gifford are open for registration.
Thanks to
Dila Velazquez – Story Producer
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
August 10, 2022