When Life Gives You Parkinson's

From Awareness to Action: The Final Episode

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. Whe...

Dialing in DBS and Sorting Through the Data with Rune Labs CEO Brian Pepin

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 i...

DBS: I Helped Surgeons Operate on my Brain

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. H...

DBS Pre-Op Talks: Love and Transition

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 ...

Brains and Drills: What to Expect with DBS Surgery

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 invo...

Navigating Deep Brain Stimulation: The Pros, Cons, and Realities

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...

Inside Larry's DBS Journey: Meeting the Brain Surgeon

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 ...

My Eye-Opening DBS "Off" Challenge

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 co...

WPC2023: Parkinson's Without Borders

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 b...

Harnessing the Healing Power of Infrared Light

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 gu...

Biomarker Breakthrough w/ Debi Brooks CEO of The Michael J Fox Foundation

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 customi...

Is Trichloroethylene an invisible cause of Parkinson’s?

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 ...

The Promise of Lithium as a Parkinson’s Disease Modifying Treatment

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...

Muhammad Ali’s Parkinson’s Journey w/ May May Ali and Michael S. Okun, MD

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 neurol...

I Don’t Care Just Call It Apathy

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 w...

Live Inspired with John O'Leary

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....

Being Well with Parkinson’s

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 an...

What’s Your Superpower? Feat. Geoff Constable

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 Architect...

What’s New and Now in Parkinson’s

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 h...

A 3-minute test for a Parkinson’s diagnosis

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 ...

I Was Clueless About Caregiving

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 yea...

Two women with Parkinson’s, 200 years apart

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.  EMAI...

Spinning Wheels

Larry & Rebecca Gifford highlight two Canadians with Parkinson’s who are sparking awareness, raising money and building community by riding their bicycles across every Canadian Province over the next three months.  Jim Redmond and Steve Iseman take a break from pedaling to sit down with Larry at picnic table outside their RV on Day two of the journey when they stopped at the Capilano River RV Park in West Vancouver.  Thank you for listening. Add your voice to the show and leave a message fo...

Down Under | A Spark, A Warrior, and World Parkinson's Day

This is part one of three of a mini-series of episodes we are calling “Down Under.” Host Larry Gifford gets you ready for World Parkinson’s Day. Learn about the new international symbol for Parkinson’s disease named “THE SPARK” and how you can use it.  Where to watch the world premiere of the new documentary “The Long Road to Hope: Ending Parkinson’s Disease.” The Parkinson Unity Walk in Central Park in New York City is going to take place April 23. IF you can’t make it, you can still partici...

The Talk | Larry & Rebecca in Conversation – Part Three of Three

This is the final instalment of our three episode mini-series we are calling “The Talk.” Hosts Larry and Rebecca Gifford talk about how Parkinson’s can send them into a hopeless spiral – at times it feeling as if they aren’t both committed to the marriage. And then there are times when Parkinson’s brings them closer together than ever.   A difficult, intimate, deeply personal conversation about keeping connected and the importance of communication for people with Parkinson’s and care partner...

Ep 5 – The Talk | Larry & Rebecca in Conversation – Part Two of Three.

This is part two of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. In this episode, they check share the emotional toll Parkinson’s takes on each of them. How to maintain agency of your life while dealing with Parkinson’s, how apathy impacts everything and where hope is found when you feel hopeless.   Thank you for listening.  EMAIL US: [email protected]   Have questions for Larry & Rebecca?  Want t...

The Talk | Larry & Rebecca in Conversation – Part Two of Three.

This is part two of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. In this episode, they check share the emotional toll Parkinson’s takes on each of them. How to maintain agency of your life while dealing with Parkinson’s, how apathy impacts everything and where hope is found when you feel hopeless.   Thank you for listening.  EMAIL US: [email protected]  Have questions for Larry & Rebecca? Want to share...

The Talk | Larry & Rebecca in Conversation – Part One of Three.

This is part one of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. They will check on how each other is doing physically and emotionally.  They will talk about personal priorities, advocacy, and how chronic disease changes and challenges the dynamics of a family. We will also get into what gives us hope. In part one, that you are about to hear – we are talking about where our life sits from a practical perspective...

Deep Dive into DBS | Part Two of Two: Shake it Off

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We learn about the innovative technology used for DBS from Dr. Alfonso Fasano, the chair of Neuromodulation and multi-disciplinary care at the University of Toronto and University Health Network. Sonia Soriano-Espert from Valencia, Spain, through translator and friend Sabela Avion, shares her experience of having DBS surgery conducted by a robot. This interview first aired on ODNA PK radio in Spain. The hosts are PD Avenge...

The DBS Journey | Part One of Two: Your Brain Controls Everything and We Can Control Your Brain

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We challenge the Neuroscience perception that the brain is everything we know and do, and everything we are. We believe, more than just a brain that makes us human, empathetic, and real.  This first part prepares you for the surgery. We call it DBS 101. We will explain terminology detail the lead up to the surgery, and tell you why it matters where the lead wires are placed in your brain. We explore our personal hesitation...

The Brain Under Siege

The first three episodes of Season 4 of When Life Gives You Parkinson’s go deep inside the brain. It has been five years since the United Nations recognized one BILLION people or one in six person’s alive today on the planet suffers from a neurological disorder, from Alzheimer and Parkinson disease, strokes, multiple sclerosis, and epilepsy to migraine, brain injuries and neuro-infections. Each year, nearly 7 million dying from neurological issues each year. Every two-and-half minutes, anothe...

DELAYED: This pod and the WPC

We missed a few weeks of the podcast and I wanted to explain why. Turns out I can’t still do it all. I’m having to prioritize more and  more on where I put my focus. This time, the podcast got short shrift. But, I figured if anyone would be understanding it’ll be my pod peeps. There are two more episodes of Season 3 of When Life Gives You Parkinson’s which will be released sometime this Summer. One on Paraquat and other toxic chemicals and one on DBS: Deep Brain Stimulation. After those episo...

NBA star Brian Grant on hard work, team work, and Parkinson’s

This episode of When Life Gives You Parkinson’s features former NBA star Brian Grant who was diagnosed with Parkinson’s disease (PD) in 2008. He spent 12 years battling for rebounds and putting points on the board playing professional basketball and the last 13 years battling Parkinson’s and putting points on the board as a PD advocate.   “You know, when I go onto court and go up against somebody who was a big name, I’d grit my teeth to try to be an animal out there,” Grant shared. But he ad...

Care Partners Advocating for Themselves

This episode of When Life Gives You Parkinson’s is all about care partners and caregivers advocating for themselves. We take our jobs very seriously and often put caring for ourselves last on our lists. Our lives and well-beings are affected on nearly every level by our Person with Parkinson’s condition, and we have our own needs, yet we still are often considered predominantly in relationship to them. How do we as care partners, caregivers and Partners in Parkinson’s advocate for equal consi...

Parkinson’s is not witchcraft or a curse | Parkinson’s Si Buko Uganda

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s addresses stigma of Parkinson is in Uganda. You will meet Hannington Kabugo and learn how the passion and resourcefulness of a single advocate can help drive change in the world. Hannington and his two sisters moved with their father out of their home after the village determined his Mom was a witch. They were never to return. He tells us the stories of what happened when he sneaked back to see her. Years la...

Getting more wise about PD with Allan Cole

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s Larry interviews Allan Cole from the PD Wise blog and the author of a new book Counseling Persons with Parkinson’s Disease. Allan, 53, received his diagnosis nearly five years ago. In addition to his advocacy work, he is a father of two teenaged girls, he is coming up on his 30th wedding anniversary and he is a professor and academic dean in Steve Hicks School of Social Work at the University of Texas at Aus...

On the Edge of Disease-Altering Drugs and a Bio Marker

Women and Parkinson’s: Hormonal cycles and pregnancy for women with YOPD

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s is about women with Parkinson’s who are diagnosed less often, less accurately and offered treatments that are less effective often because hormonal cycles play a role and it’s a rather unexplored area of the disease. We will hear from three women with Parkinson’s who also experienced pregnancy, giving birth and parenting with PD. All of their experiences were different, but certainly complicated by their Pa...

Red Letter, Give a Dime

In this episode of When Life Gives You Parkinson’s, I am the host of a live event with four leading experts in the Parkinson’s world. Together they wrote a book called “Ending Parkinson’s Disease” and launched a red letter campaign to the White House. It’s been one year since the book was released and it has helped to inspired the movement PD Avengers, which I co-founded. What’s new in Parkinson’s? What have they learned? What’s standing in our way of success? Listen as Dr. Ray Dorsey, Dr. Ba...

Expanding Your Healing Tools: Integrative Medicine Part 2

This episode of When Life Gives You Parkinson’s is about exploring Eastern holistic healing modalities as a complement to the pharmaceuticals relied upon by Western Medicine. Parkinson’s touches a global community, so we might as well use all the global tools to address our health and wellness. Sometimes it is a matter of having the courage to try something new. For me, last year, that was acupuncture. I am afraid of needles, but quite enjoyed the pain relief it provide and calming, centerin...

All about falling: the down side of PD

Hi, it’s Larry. I’m 49 and I have Parkinson’s disease. This episode of When Life Gives You Parkinson’s is about managing falls. It is winter and where we live snow and ice and black ice and freezing rain are all hazards, which increase everyone’s chances of falling. People with Parkinson’s are more prone to slipping and stumbling, skidding and tumbling to the ground. So, we should talk about it. I didn’t consider it a topic I’d need to know much about until I get much older. I was wrong. One ...

Exploring Integrated Medicine with Dr. Indu Subramanian

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I discover and discuss integrated medicine with Dr. Indu Subramanian. Integrated medicine is where Western and Eastern medicines meet. Activities we all are aware of like yoga, mindfulness, acupuncture and massage are among the activities that fall into integrated medicine. I first met Indu when she interviewed me on a webinar for PMD Alliance in September 2020. Indu is Canadian, having been born and raised in Ontario, s...

Empowerment through the integrative medicine approach

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I discover and discuss integrative medicine with Dr. Indu Subramanian. Integrative medicine is where Western and Eastern medicines meet. Activities we all are aware of like yoga, mindfulness, acupuncture and massage are among the activities that fall into integrative medicine. I first met Indu when she interviewed me on a webinar for PMD Alliance in September 2020. Indu is Canadian, having been born and raised in Ontario...

• Advocacy, collaboration and Parkinson’s in 2021 – featuring Dr. Karen Lee and Eli Pollard

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I are talking with two leaders of Parkinson's organizations about the impact coronavirus has had on advocacy, collaboration, new programs. Karen Lee and Elizabeth “Eli” Pollard are true leaders with serious minds and senses of humor, and both are visionary when it comes to bringing the Parkinson community together with a purpose.  Dr. Karen Lee took on the role of President and CEO of Parkinson’s Canada in the middle of ...

Advocacy, collaboration and Parkinson’s in 2021 – featuring Dr. Karen Lee and Eli Pollard

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I are talking with two leaders of Parkinson's organizations about the impact coronavirus has had on advocacy, collaboration, new programs. Karen Lee and Elizabeth “Eli” Pollard are true leaders with serious minds and senses of humor, and both are visionary when it comes to bringing the Parkinson community together with a purpose.  Dr. Karen Lee took on the role of President and CEO of Parkinson’s Canada in the middle of ...

17 Things That Give Me Hope About Parkinson’s

In this episode of When Life Gives You Parkinson’s, Larry and Rebecca Gifford welcome 2021 by digging through a sack full of hope. Each week there seems to be another headline that signals major breakthroughs – as in bio-markers and disease altering treatments – are just around the corner for Parkinson’s. We talk to two people who confirm we are on the precipice of major changes in how we view and treat the disease.  However, it is not just about the diagnosis and treatments. PD advocates com...

Keep Walking. Keep Laughing

In this episode of When Life Gives You Parkinson’s, you will meet Ralph and Berys Richardson who have been married 52 years. Five years ago, doctors diagnosed Ralph with Lewy Body Dementia and then Parkinson’s disease a few years later. When COVID-19 hit, Ralph’s usual exercise programs were cancelled. So, with the help of Berys and his caretaker Greg Hicks, he decided to walk up and down his driveway everyday. He set his mind to doing 30 laps. He reach his goal in 17 days. Then he set his si...

When dopamine agonists lead to agony

In this episode of When Life Gives You Parkinson’s, what happens when the side effects of your medication are causing more harm than the disease itself? Many people with Parkinson’s are treated with dopamine agonists, which work perfectly for thousands of people, but can cause uncontrollable, destructive behaviors for others. Among the issues are compulsive shopping, hyper-sexuality, binge eating, internet addictions, and excessive gambling. Larry, Rebecca and Niki will introduce you to two p...

Even Patients Can Push Things Along

This season we are talking a lot about Parkinson’s advocacy. From advocating for yourself with your doctor to people with Parkinson’s communicating with law makers, and others who are educating, participating in research or sharing their story whether through a podcast, a blog, a book, Social Media, magazines, or one on one conversations with a friend. In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christi...

The Doctor - Patient Partnership

In this episode of When Life Gives You Parkinson’s, listen in as Larry Gifford gets his sixth month check up with his neurologist. Larry, his wife Rebecca and co-host Niki Reitmayer discuss the importance of trust and communication in building a relationship with your neurologist and all the other members of your care team – even your partner and your friends. Plus, saying “no” to a doctor can be difficult, but it is an important option to use when you do not agree with the prescribed treatme...