Episodes
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In this bittersweet finale of "When Life Gives You Parkinson's," we reflect on the incredible journey we've shared over 124 episodes. From the very first episode to this one, we've laughed, cried, and learned together. Countless guests have graced our show, sharing their stories, insights, and expertise, making each episode a treasure trove of knowledge and connection.
Hosts Larry and Rebecca take a moment to express gratitude to everyone who has contributed to the success of the podcast. Whether you've been a guest, a listener, or a supporter, your presence has made a difference. Through the highs and lows, the triumphs and challenges, we've built a community bound by a shared mission: to raise awareness, offer support, and ultimately find a cure for Parkinson's disease.
As we bid farewell to "When Life Gives You Parkinson's," we carry with us the memories, the laughter, and the friendships forged along the way. Thank you, everyone, for being part of this incredible journey. Though this may be the final episode, the impact of our collective efforts will continue to resonate far beyond the confines of this podcast.
From all of us at "When Life Gives You Parkinson's," thank you, and be well.
EMAIL US: [email protected]
JOIN PD AVENGERS: www.pdavengers.com
Thanks to Rebecca Gifford, Niki Reitmayer, Chris Duncombe, Dila Velazquez, Rob Johnson, Greg Schott, and Corus Entertain. Special thanks to Parkinson Canada who has been there supporting the podcast since the beginning. -
In the latest episode of "When Life Gives You Parkinson’s," Larry Gifford shares insights into his Deep Brain Stimulation (DBS) journey alongside his partner, Rebecca Gifford. Larry expresses excitement about the positive impact of DBS on his symptoms, noting improvements in walking, voice, and overall confidence. He recommends Dr. Jon Stamford’s new DBS DIARY for a comprehensive view of the DBS dilemma. The episode features an interview with Brian Pepin, CEO of Rune Labs, the technological interface for Medtronic's DBS system. For those considering DBS, Larry invites questions through the show notes or via email. The podcast, a production of Curiouscast, is sponsored by PD Avengers, urging listeners to participate in SparktheNight.org and share the podcast for Parkinson’s awareness. The episode concludes with a reminder to stay positive, exercise, and keep listening until the next installment.
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Missing episodes?
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In this episode of "When Life Gives You Parkinson’s," Larry and Rebecca dive into Larry's recent Deep Brain Stimulation (DBS) surgery. It's the culmination of their DBS series, showcasing moments before and after the procedure. (Episode six of our 2023 DBS series)
Larry shares his experiences, from the anticipation of the surgery to post-surgery reflections. He describes the fears he had about the head frame and the surgical process itself, emphasizing the involvement of Nurse Nancy and Dr. Honey. The detailed account covers the electrode installation, the testing of potential targets for relief, and the moments of consciousness during the surgery.
Post-surgery, Larry discusses the "Honeymoon" period, a phase of initial relief and remarkable changes. He talks about the reduction in medication intake, improved bodily functions, and sensory experiences like regaining his sense of smell. Despite these positive changes, he notes signs of needing to gradually reintroduce medication as he experiences disorientation and fatigue.
Larry and Rebecca conclude with observations of minor personality changes and a heartfelt conversation about what comes next.
It's a personal, insightful episode that offers a firsthand account of the realities and changes that come with DBS surgery for Parkinson's Disease.
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
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.
Additional thanks to...
PD Avengers – We are building a global alliance to end Parkinson’s. Join us. -
Season 6, Episode 6
SHOW NOTES Oct 17, 2023
TITLE: DBS Pre-Op Talks: Love and Transition
Podcast Notes:
In the latest episode of the When Life Gives You Parkinson's podcast, hosts Larry and Rebecca Gifford discuss the upcoming Deep Brain Stimulation (DBS) surgery. The surgery is scheduled for October 24th, 2023, at UBC Hospital in Vancouver, British Columbia, Canada.
Larry and Rebecca take the audience through their preparations, discussions, and feelings as the surgery date approaches. They touch on a wide range of topics, including their emotional and practical preparations, managing their son Henry's needs, and the changes in household responsibilities.
They also discuss the potential outcomes of the surgery and what they hope to achieve. They emphasize the importance of quality-of-life improvements and share their gratitude and love for each other.
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. -
In this episode, Larry and his partner, Rebecca, discuss what to expect right before, during, and after DBS surgery. The surgery is scheduled for October 24th, 2023, and this episode was recorded about two weeks before the surgery.
The episode covers the pre-surgery preparations, including the need to stop medication before the surgery, and an informative description of the MRI process. Nurse Nancy, who works at British Columbia's DBS clinic, provides insights into the surgery day, which involves anchoring a frame to the patient's head, drilling small holes in the skull, and testing electrode placement to ensure optimal DBS results. The conversation also touches on battery replacement and the possibility of technology upgrades over time.
Nurse Nancy emphasizes the importance of closely monitoring the battery and making adjustments as needed. The recovery period is discussed, with a recommendation to take it easy for about six weeks to allow the brain to heal before turning on the stimulator. The potential reduction in medication is mentioned, with an emphasis on gradual adjustments to ensure a balance between symptom control and medication side effects. The episode provides a detailed and insightful overview of the DBS procedure and what patients can expect throughout the process. -
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.
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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.
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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 -
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 -
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. -
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 -
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 LINKSBOOK: ENDING PARKINSON’S DISEASE; A PRESCRIPTION FOR ACTIONJOURNAL 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 DeceitCBS MORNING (USA)Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades laterLOS 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 groundwaterEPA FACT SHEET | TRICHLOROETHYLENE EPA SUPERFUND HOME PAGE WIKIPEDIACANADIAN FEDERAL CONTAMINATED SITES INVENTORY (FCSI) CONTAMINATED SITES HOMEPAGEMuch gratitude for your contentA 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] questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsonsFollow us, Larry & Rebecca Gifford Twitter: @ParkinsonsPodFacebook: Facebook.com/ParkinsonsPodInstagram: @parkinsonspodThanks to CuriouscastDila Velazquez – Story ProducerGreg Schott – Sound DesignOur 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.
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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. -
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. -
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. -
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. -
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. -
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. -
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. -
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. - Show more
