74 episodes

When Life Gives You Parkinson’s is an honest, funny, and engaging podcast chronicling host Larry Gifford’s personal journey with Parkinson’s disease. Gifford, his wife Rebecca, and their son Henry live in Vancouver, British Columbia. Gifford has worked in radio for nearly 30 years. In August 2017 he was diagnosed with Parkinson’s at the age of 45. Now in its second season, When Life Gives You Parkinson’s is a first-hand account of what it is like to live with PD for Gifford, his family, and other members of the worldwide Parkinson’s community.

Answering probing questions from co-host Niki Reitmayer and letting listeners eavesdrop in on intimate chats with his wife, Gifford uses humour to diffuse heavy content and give the podcast a hopeful tone. He gives voice to Parkinson’s experts and advocates from around the world and together they openly tackle tough topics. The authentic, frank conversations along with compelling storytelling is what makes this podcast interesting, informative, and enlightening.

Special thank you to our partners. Presenting partner is Parkinson Canada, content and promotional partner Spotlight YOPD, and The Michael J. Fox Foundation for Parkinson’s Research Parkinson’s IQ + You.

When Life Gives You Parkinson's Curiouscast

    • Medicine
    • 4.7, 89 Ratings

When Life Gives You Parkinson’s is an honest, funny, and engaging podcast chronicling host Larry Gifford’s personal journey with Parkinson’s disease. Gifford, his wife Rebecca, and their son Henry live in Vancouver, British Columbia. Gifford has worked in radio for nearly 30 years. In August 2017 he was diagnosed with Parkinson’s at the age of 45. Now in its second season, When Life Gives You Parkinson’s is a first-hand account of what it is like to live with PD for Gifford, his family, and other members of the worldwide Parkinson’s community.

Answering probing questions from co-host Niki Reitmayer and letting listeners eavesdrop in on intimate chats with his wife, Gifford uses humour to diffuse heavy content and give the podcast a hopeful tone. He gives voice to Parkinson’s experts and advocates from around the world and together they openly tackle tough topics. The authentic, frank conversations along with compelling storytelling is what makes this podcast interesting, informative, and enlightening.

Special thank you to our partners. Presenting partner is Parkinson Canada, content and promotional partner Spotlight YOPD, and The Michael J. Fox Foundation for Parkinson’s Research Parkinson’s IQ + You.

    Not just “care givers”, we are Partners in Parkinson’s

    Not just “care givers”, we are Partners in Parkinson’s

    In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford, and I explore the important role caretakers play in lives of people with Parkinson’s. We visit with people we met through season two to discuss the balance between being a spouse and a caregiver; we wrestle with what to call these important people and wonder why the medical and scientific communities do not listen to them more closely and tap them for real knowledge about living with Parkinson’s disease.

    Through the discussions, it has become clear to me that our partners are amazing people who care for us and prepare, as best they can, to deal with all of our unpredictable PD symptoms. And they also have responsibility to run the household, sometimes over small children and pets, and then their own self-care, their own interests and careers get whatever time is left over.

    Usually very little, if any time is ever leftover.

    Sure, we’ll travel while we can and set off on new adventures as COVID, money, and time allows. Life doesn’t end with a diagnosis. It changes. It constantly changes.

    As years roll on, these amazing people will bear witness to their partner’s silent suffering as Parkinson’s slowly traps the person they love inside a body that will no longer obey. 

    Each minute…

    Each day… 

    Each year...

    Parkinson’s tightens its grip.

    In my case, the disease has already begun to restrict my ability to be present at times and to empathize.  Slowly, this relentless, degenerative neurological brain disorder causes disorder in my brain. It steals my thoughts and my voice. In time, I know Rebecca will be there to support, care, challenge me and others, and advocate on our behalf. A writer by trade, she will find clarity and might in putting pen to paper, invoking the compassion of Quan Yin and just the right words to strike like lightning and reverberate like thunder. 

    There are millions of people like my wife who have untapped knowledge and a lived experience with Parkinsons that researchers and neurologists could leverage in making life better for people with Parkinson’s until that day when we find a way to end it.

    We should all demand to hear what they have to say. Immediately.

    We are all up against the clock.

    Follow me, Larry Gifford 

    Twitter: @ParkinsonsPod

    Facebook: Facebook.com/ParkinsonsPod

    Instagram: @parkinsonspod

    Thank you to:

    Tim & Sheryl Hague Check out their holistic Parkinson’s center at “U-Turn Parkinson’s” and follow Tim on Twitter and Instagram @TimHagueSr  

    Deana Grinnell

    Jimmy Choi – follow Jimmy on Twitter @JCThr33 and on Instagram @jcfoxninja 

    Gila Bronner – Director of Sex Therapy Services at Sheba Medical Center.

    Ellen Bookman – Ellen is very active in her PD boxing community www.pdboxing.org. Follow Ellen on Twitter @luvlivin3

    Joe & Sarah Possenti

    and to my wife and partner in Parkinson’s Rebecca Gifford. Follow her on Twitter @RebeccaJGifford and on Instagram @loveandmud  

    Our presenting partner is Parkinson Canada http://www.parkinson.ca/

    The toll free hotline 1-800-565-3000

    Follow them on Twitter @ParkinsonCanada

    Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

    Our content and promotional partners

    Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation.

    Navigating Parkinson’s and COVID-19 Podcast: Check out the limited series podcast on COVID-19 and Parkinson’s that I am hosting with Dr. Rachel Dolhun for the Michael J. Fox Foundation.

    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. 

    WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific confe

    • 59 min
    ESPN Founder Bill Rasmussen

    ESPN Founder Bill Rasmussen

    In this episode of When Life Gives You Parkinson’s, I interviewed the founder of ESPN, Bill Rasmussen, who publicly announced his Parkinson’s in 2019. Bill was diagnosed six years ago, he is still active and still travels around the country giving talks to students and business leaders. At first, he says, he tried to hide his symptoms during his speeches.

    “My left hand is the one that has the biggest twitch, so to speak. I thought I'd keep it behind the podium or this or that, and after one event, they sent me a tape and I looked and that wasn't very effective. And so at that point, I said, "You know what? This is a fact of life. It's not anything to be embarrassed about. People catch cold, people break their leg, people knock their head up against a wall or whatever. And that's okay so why isn't Parkinson's okay?"

    The 87-year old takes medication each day, strives to keep operating at the same level as before his Parkinson’s diagnosis, and still wakes up each morning with a positive thought. As you might expect from the founder of ESPN, he has an analogy in regards to PD. He says,”The researchers are like the official scorekeepers up in the booth, but we are the players on the field. We’re walking through it every day. They can study my brain, but I have to use my brain. And they can study your brain, but you have to use your brain to get through each day. And those are the things that I think if we can convince people when you hear the word Parkinson's, you don't stop thinking, you don't stop living or any of those things. You adjust and keep on keeping on, as they say.”

    My interview with Bill Rasmussen is featured as part of limited series of podcasts produced by the Michael J Fox Foundation, co-hosted by Rachel Dolhun, and me. All the episodes can be found online at The Michael J Fox Foundation for Parkinson’s Research website.

    Follow me, Larry Gifford 

    Twitter: @ParkinsonsPod

    Facebook: Facebook.com/ParkinsonsPod

    Instagram: @parkinsonspod

    • 41 min
    Health and Technology

    Health and Technology

    In this episode of When Life Gives You Parkinson's, I explore how the collision of health, technology and innovation in the private sector is revolutionizing approaches to measuring brain activity and treat brain related issues from Parkinson’s to major brain injuries and concussions.

    A major part of having Parkinson's disease is finding out what matches you in terms of diet, exercise, pharmaceuticals, therapies and relationships so you can manage your symptoms and maintain the best quality of life for as long as possible. But, are you aware of everything that's out there that you could be using? I wasn't. From hand-made, steel stationary bikes designed especially for people with Parkinson’s to a tongue stimulator to improve your balance and walking gait, I feel as if I’ve found a secret Bat-cave of cool, technology that I never knew existed. All of it comes with a price tag and insurance does not cover it.

    DISCLAIMER: I am not a spokesperson for these companies or products, they are not clients and have not paid for this placement. These products and services are part of my journey in exploring all the ways to live my best life with Parkinson’s.

    First, the stationary bike. It is called the Theracycle. Joe Possenti bought a Theracycle a year ago and uses it most days. He has had Parkinson’s for 12-years. He told me it’s a game-changer for him. The 200-pound, motorized cycle is designed to improve the lives of people with degenerative brain diseases and works by having assisted pedaling and handlebars that move like an elliptical machine and a the rowing machine.

    The most popular Theracycle costs $4,800 ($6,700 CAD), is delivered free in the continental United States and comes with a money-back guarantee.

    There is quite an operation underway in Surrey B.C. Recently, I toured The Health and Technology District, which is located across the street from Surrey Memorial Hospital. It is the brainchild of Dr. Ryan D’Arcy, a neuroscientist and entrepreneur.

    Dr. D’Arcy says there are 75 tech companies and 96 medical specialists integrated, collaborating and bumping into each other in one building alone.

    As I toured the facility, I realized I was not aware how many available treatments there are for the symptomatic issues of Parkinson’s. For instance, I saw two really cool therapies for treating gait issues so people can learn to walk normally again. The Lokomat, at NeuroMotion Physical Therapy, reminds me of Iron Man. Patients slip on these huge robotic legs strapped to a treadmill. Through forced and repeated motion, new neuropathways are created which retrains your brain’s communication to your legs and feet.

    The second treatment is called PoNS, which is short for Portable Neuro-modulation Stimulator.  This lightweight portable device slips around your neck rather snug and hanging off one end is a rectangle pad which goes into your mouth. It stimulates your tongue. Sonya Brody is a neuroscientist and the Vice President of services at the Surrey Neuroplasticity Clinic, and she told me we all have 12 cranial nerves that come off the back of our brain and two of them connect to the front, one-third of your tongue.

    One of the ongoing issues with treating Parkinson’s is the measurement tools for the disease progression and executive function are too subjective. Dr. D’Arcy created The NeuroCatch™ to take the guesswork out of measuring what is going on inside your head. It’s a six-minute test that measures auditory sensation, basic attention, and cognitive processing. Not only helpful with measuring brain function in people with Parkinson’s, but D’Arcy is working with hockey clubs to conduct the 6-minute test during games to determine if a player has a concussion or not.

    Another machine affectionately referred to as the “barf box,” measures balance. The NeuroCom® SMART Balance Master® measure

    • 54 min
    Parkinson’s, Parenting, and the Coronavirus Pandemic

    Parkinson’s, Parenting, and the Coronavirus Pandemic

    In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford and I share how COVID-19 is affecting our family. From managing stress and PD symptoms to becoming accustomed to living well during a time of uncertainty, we are all learning many lessons. Here are five of the lessons that Rebecca and I have learned thus far:
    My Parkinson’s symptoms are less intense when I work from home compared to when I go to the office. This is a revelation that I probably would not have discovered without the pandemic forcing me to work remotely. I have already started discussing this with my company to figure out what my new reality could be when we are through the social distancing demands and most employees are encouraged to return to the office.
    Telemedicine is long overdue. I didn’t “go” to my last neurology check-up, I logged into it from my kitchen table. I feel like I had the full attention of my doctor and there we no interruptions for signatures, questions or updates on other patients from the nurses. It was just the doctor, Rebecca and me. If you live hours away from a neurologist or movement disorder specialist or just have difficulty getting from your home to anywhere, telemedicine makes a lot of sense. I hope it is here to stay.
    Connecting with community can be energizing, supportive and inspiring. From one on one FaceTime video calls with family and friends or group video chats with colleagues and social media “friends” who, until now, we had only met through tweets and Facebook posts. I’m grateful for the time, attention and community so many people have offered with an open heart and open mind. I also love that so many free exercise, yoga, and boxing classes are now being made available online to keep us active and exercising despite being cooped up inside.
    Managing Parkinson’s symptoms has better prepared people with PD and care partners for COVID-19. The uncertainty of Parkinson’s forces us to approach life minute by minute, hour by hour, and day by day. We make plans with the best of intentions and cancel them more often than we would like because a symptom flares up or exhaustion overwhelms us. Most people are not accustomed to have so much lack of control of their life. Many are resisting the isolation, are angry, frustrated, and are desperately grasping for control of something. The Parkinson’s community can be role models for others on how to let go and embrace what comes in each moment.  
    It is exciting to see how when the world decides to make something a priority, Government and regulatory red tape magically disappears and the finest minds of the world collaborate to solve a single issue. In this case, it is the race to creating a vaccination for COVID-19. Now that we know it is possible, I propose after COVID-19 is under control, we take this model and aim those global resources and all of that passion and urgency on to finding a cure for Parkinson’s… and then ALS, MS, Alzheimer’s and all the rest.

    In the podcast, we discuss these and many other lessons and observations COVID-19 has thrust upon us.

    Please take time to share what lessons, observations and coping mechanisms you have discovered during these unprecedented times by leaving a voice message here:  https://www.speakpipe.com/WhenLifeGivesYouParkinsons

    Follow me, Larry Gifford 

    Twitter: @ParkinsonsPod

    Facebook: Facebook.com/ParkinsonsPod

    Instagram: @parkinsonspod

    Follow Co-host and Producer Niki Reitmayer

    Twitter: @Niki_Reitmayer

    Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

    Our presenting partner is Parkinson Canada http://www.parkinson.ca/

    The toll free hotline 1-800-565-3000

    Follow them on Twitter @ParkinsonCanada

    Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

    Our content and promotional partners

    Parkinson’s IQ +

    • 48 min
    From Rock Bottom to American Ninja Warrior

    From Rock Bottom to American Ninja Warrior

    In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Jimmy Choi. Jimmy was diagnosed with Parkinson’s seventeen years ago. He ignored it for eight years. He took his pills every day, but he didn’t talk about it, he ignored it, he hid it and lied about it to friends and family.

    He was quite certain himself that the Parkinson’s diagnosis was probably wrong. “I convinced myself that one day I'm going to wake up and my doctor is going to tell me that, ‘Oh I'm sorry Mr. Choi, we made a mistake.” Jimmy continues his fantasy, “You actually have a tumor in your head. Once we remove it you're gonna be perfectly fine.’”

    Jimmy is stubborn. It takes a lot to change his position. But, Parkinson’s will not be ignored. Over the course of eight years, gradual changes happen on a daily basis. Insomnia, rigidity, and fatigue were all taking a toll on him. Parkinson’s disease pushed Jimmy to the edge. And he fell.

    “I was walking with a cane. I was no longer active. And as if things weren't bad enough, I was snapping at my family, screaming at my kids, and sitting around really not contributing to the daily activities of a household. I was walking down the stairs with my then 8 month old son Mason and we fell down the stairs.”

    His wife Cheryl and their daughter Karina watched in horror. At that moment, Jimmy made a decision that would change his life forever. He knew he was going to work hard to become the dad and husband his family deserved. He also began to participate in clinical research trials. It was during those trials, Jimmy realized exercise was a component of every trial he participated in and when he exercised he felt better.

    On his own, he began to take walks around the neighbourhood with his cane. And before too long, he was walking without it. His walk become a jog and his jog trained him for a 5k. Jimmy successfully transformed his stubborn resistance to Parkinson’s into determination, positivity and persistence in living an active, healthy life with the disease.

    In the past seven years, Jimmy has participated in over 100 half marathons, 15 full marathons, one ultra-marathon, six Grand Fondo rides, multiple Spartan Races and countless 5K and 10K runs. He became a high profile Parkinson’s advocate when he competed on American Ninja Warrior. Through his events, Jimmy has raised more than $250,000 for Parkinson's research.

    You don’t have to be Jimmy Choi when you’re exercising, but you can be Jimmy Choi in how you approach your Parkinson’s disease. He takes his PD one day, and sometimes one hour, at a time. His mantra is, “make today a little better than yesterday and make tomorrow a little bit better than today.”  

    Knowing Jimmy Choi is in the fight against Parkinson’s, makes today better yesterday already.

    Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

    Follow me, Larry Gifford 

    Twitter: @ParkinsonsPod

    Facebook: Facebook.com/ParkinsonsPod

    Instagram: @parkinsonspod

    Follow Co-host and Producer Niki Reitmayer

    Twitter: @Niki_Reitmayer

    Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

    Also, thank you to the following contributors and guests.

    Follow Jimmy Choi on twitter and instagram

    Our presenting partner is Parkinson Canada http://www.parkinson.ca/

    The toll free hotline 1-800-565-3000

    Follow them on Twitter @ParkinsonCanada

    Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

    Our content and promotional partners

    Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

    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. 

    WPC2022- Save the date for the sixth Worl

    • 53 min
    The Never-ending Hunt For a Parkinson's Cure

    The Never-ending Hunt For a Parkinson's Cure

    In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with leaders of three Parkinson’s organizations about the never-ending hunt for a cure. The world has been five years away from a cure for Parkinson’s for the last thirty years or so. That sentiment is an update from when Tom Isaacs uttered a similar phrase in the early 2000’s. Isaacs had Parkinson’s and was a fierce advocate for those living with the disease. He co-founded Cure Parkinson’s Trust in England in 2005.

    Today, that organization’s Deputy CEO, Helen Matthews, continues to carry Tom’s torch. She says we are an awful lot closer to a cure than we were 15 years ago. However, “for there to be a game changer,” Matthews says, “Parkinson's needs to be a global health priority recognized by governments globally who are properly investing in this.” Matthews points to Australia, where the government has allocated $30 million over five years to identify disease-modifying drugs to slow the progression of Parkinson’s. “You know, we need further injections of cash here in the UK. We need further injections of cash in Canada. We need consortiums working in all territories. You know, North America really investing and making sure that Parkinson's is a health priority.”

    Of note, Parkinson Canada has requested $30 million over five years from the Federal Government to establish the Canadian Open Parkinson’s Network. C-OPN would be a shared, open data platform with the goal to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement, and ultimately find a cure for this life-limiting disease. It would establish Canada as another leading country in the global commitment to ending Parkinson’s disease. The 2020 Federal Budget was to be unveiled on March 15th, but has been indefinitely delayed due to COVID-19.  

    Marking 20 years in operation and having invested one billion dollars in Parkinson’s research dollars, The Michael J. Fox Foundation has learned a thing or two over the past two decades. Deputy CEO Sohini Chowdhury is grateful they have raised such a mind-blowing amount of money for research, but is careful to keep it in perspective. “When you think about drug development in general, “ Chowdhury says, “the numbers that are often cited or that it takes anywhere between 12 and 15 years to get a drug moving through the development process and into patients hands and that it can cost upwards of a billion dollars that entire process.” 

    At Parkinson’s UK, Chief Executive Steve Ford and his team have committed 8 million pounds equivalent to more than 14 million Canadian dollars for Parkinson’s research each year. Ford also has helped to establish The Critical Path for Parkinson's. “We've brought together foundations from around the world. The Fox Foundation and the Parkinson's Foundation are involved in this. Ten or eleven global pharmaceutical companies are involved as well.” Ford continues, “And what this is doing is bringing everybody together, sharing data, drug company data, clinical trial data, and the kind of data that some researchers all around the world have from following patients up over a number of years.” All that information is used to shape the future of clinical trials and to work with the regulators to get that kind of approved.”

    With this approach, individual companies do not have to go and get their own kind of trial design approved by the regulator and spend millions of pounds dollars doing that. The Critical Path for Parkinson’s consortium can do that on behalf of the whole industry, which dramatically reduces the costs of designing new research studies.

    As more than ten million people with Parkinson’s in the world await the evasive cure, we hold on to hope and Tom Isaac’s believe that a cure is possible.

    Please comment

    • 47 min

Customer Reviews

4.7 out of 5
89 Ratings

89 Ratings

G & Sachs ,

Thank you Larry and Team

I love this Podcast. I discovered you, Larry, when you were hosting a MJF webinar. You mentioned your podcast and I’ve been listening ever since. My husband was diagnosed in November 2018 at age of 61. He is a reader/researcher, but I love learning about PD on your pod. It is so much more interesting and entertaining, and you can listen while doing other things. Thank you!! Stay well!

Mnsantan ,

Wish I knew about this sooner

I am 2 years into my Parkinson’s journey. We had the good fortune to hear Larry in person at the Jan 2020 Phoenix PDIQ.

Your podcast does a great job of breaking through the noise and the BS to get us Parkies the information we need.

I use the podcasts as motivation when I go out for my daily walks.

Please keep up the great work. Our best to you Larry as well as Rebecca, Henry and Nicole

MJanineG ,

Informative

Thankful to find this Podcast. As a healthcare worker it is informative to learn from the Larry, his friends and family. He brings in qualified speakers to further explore topics. The generic drug episode was eye opening and shocking. Keep it up!

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