65 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

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.

    This might be the closest thing to a cure for Parkinson’s

    This might be the closest thing to a cure for Parkinson’s

    In this episode of When Life Gives You Parkinson’s, despite some setbacks there is still an appetite to trial a treatment for Parkinson’s that many believe is the antidote. GDNF or Glial cell line derived neurotrophic factor are naturally occurring and are vital for normal functioning of the brain.But, when GDNF is delivered directly to the brain, for some people, it is as if they’ve never had Parkinson’s.

    The phase II GDNF trial at University of Bristol, seemingly, was made possible through the sheer will and force of the late Parkinson’s advocate Tom Isaacs and his Cure Parkinson’s Trust. The broadcast of Tom’s BBC Radio 4 documentary, “Chasing a Cure,” about the treatment, was heard by Vicky Dillon. She vowed if it ever came around again she’d sign up. And she did. “We were the guinea pigs basically to see if we would tolerate the surgery and the insertion of all this plumbing in our brains,” she said. “They cut me from my hair line to like the middle part of my head and then put in all four catheters that went deep into the into my brain. And then you had another bit of plumbing that run down the side of your head to a port behind you left ear, which is where the infusions were given. So, there was quite a lot of stuff in there.” Vicky was given GDNF for the better part of two years. Her symptoms improved almost immediately, “By the time I took the second infusion, I noticeably felt different. I remember waking up a couple of days afterwards and there was no Parkinson symptoms for about an hour or so. I thought, ‘oh my God!’. And gradually everything started getting better.”

    Vicky’s symptom improved 63% and all the participants showed cell regeneration on PET scans, but the trail did not meet its primary end point. “That’s ridiculous,” says Jayne Calder. Her husband Darren was also in the trial and it improved his symptoms more than 50%. “Without any doubt whatsoever in 100 percent of those participants minds we have got the cure for Parkinson's.”

     Vicky and Jayne are leading the charge to raise awareness and money for another trial. They have been very vocal. They’ve even recorded a song called “Shine” by the G.D.N.F.ers. Each download includes a donation to another GDNF trial. They have also caught the attention of Parkinson UK. The organization’s chief executive Steve Ford is ready to throw massive amounts of money towards the project if everything on the application looks right. “We spend around eight and a half million pounds annually. That's eleven or twelve million dollars a year on research. We haven't seen the application yet, but we envisage it's going to be in the order of an annual spend on research. So, that's not significant more than we've ever spent before.” Recruiting for the next GDNF trial is expected to begin by the end of 2020 or just after the first of the year 2021.

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

    Links we mentioned and source material for the show:

    U.S. TRIAL |Phase 1 trial of GDNF is slated for 2022 will test viral vectors for delivering GDNF in escalating doses.

    RADIO DOCUMENTARY | BBC Radio 4 “Chasing a Cure” with Tom Isaacs

    WEBSITE | ScienceofParkinsons.com

    FUNDRAISER | Raise a Million for GDNF by Darren & Jayne Calder

    FUNDRAISER | “Shine” performed by GDNFers and written by Vicky DIllon

    EDITORIAL | Where Are We One Year On by Steve Ford, Parkinson UK

    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.

    Vicky Dillon

    Darren & Jayne Calder

    Steve Ford, Parkinson U.K.

    Helen Matthews,

    • 50 min
    Stem Cells, Parkinson's and Bad Batch

    Stem Cells, Parkinson's and Bad Batch

    From prayers and real promise to being preyed upon, this is the real deal about stem cell therapy and Parkinson’s disease. In this episode we explore stem cell therapy for Parkinson’s disease.

    The promise of stem cells is exciting and there's amazing research underway.

    Later this year, the first U.S. human trials for stem cell therapy for Parkinson’s will begin in New York. This could open up a potential path for new treatments and Dr. Lorenz Studer has spent the last 22 years perfecting the treatment.

    In 1998, in Studer’s lab, the neuroscientist and founder of the Center for Stem Cell Biology at Memorial Sloane Kettering discovered a successful technique to transform animal cells into dopamine cells. They could transplant them into the brain and measure positive impacts on motor symptoms of Parkinson’s disease in rat models.

    Studer remembers it as an eureka moment, and it took from 1998 to 2011 for his team to discover the recipe for the human dopamine cells and they have now grown one billion of them. They are stored in vats filled with liquid nitrogen and have been safety tested hundreds of times.

    Now, nearly ten years after perfecting the recipe, people with Parkinson’s will put these cells to the test and hopefully taste the sweet success of stem cell replacement therapy.

    While Studer’s stem cell therapy is at least five years away, there are some companies claiming they can help Parkinson’s and other diseases with existing stem cell treatments. Science and Health journalist Laura Beil highlighted some of these organizations in her six part investigative podcast “Bad Batch” by Wondery.

    The podcast explores a real life story of what happened when a bad batch of cells were distributed and injected into people in Texas. She empathizes with the victims, as she recalls she would’ve done anything to help her father who had Parkinson’s. 

    Dr. Studer has also heard these stories and recommends you consult with a doctor before seeking any treatments. He cautions some companies looking to make a quick buck actually take fat cells out of the body and re-inject them into your body, while claiming they can cure your disease.

    The only FDA approved stem cell treatment is for blood diseases.

    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.

    Laura Biel, host of the Bad Batch podcast from Wondery

    Brian Fiske, SVP of Research Programs at The Michael J. Fox Foundation

    Lorenz Studer, MD Director of Center for Stem Cell Biology at Memorial Sloan Kettering

    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 World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

    Links we mentioned and source material for the show:

    Bad Batch podcast

    Fox Trial Finder

    International Society of Stem Cell Research

    ClinicalTrials.gov

     ARTICLE: Canadian man growing nose cells on spine after stem cell treatment 20 years ago.

    ARTI

    • 45 min
    How Writing Can Help People With Parkinson’s

    How Writing Can Help People With Parkinson’s

    This week on the podcast, we’re talking about writing as a life skill. Learning to access your own inherent creativity can be a powerful tool for any of us dealing with challenge and change. For folks with Parkinson’s in their lives, it can offer both physical and emotional benefits.

    Science agrees! Studies and reputable sources tell us that writing and other forms of creative expression can reduce stress, help with sleep, improve cognition, improve your mood, help manage symptoms of depression, lower blood pressure, improve lung and liver functioning and decrease time spent in the hospital.

    Beyond the more measurable benefits, I believe — because I’ve experienced it and seen it over and over — that learning to access that beautiful creative space we all have can bring balance and even peace when you’re feeling overwhelmed. It can help us change our relationship with Parkinson’s Disease, or any of life’s challenges, by giving us a safe and healthy place to express our feelings and thoughts, explore our inner life, find perspective and guide us toward a way to move through those dark times. Often, acknowledging what you’re experiencing by simply writing it down is a critical first step towards healing.

    If we take it to the next level, there are even more benefits to be found. When we are courageous enough to share our expressions, we all benefit. Stories bind us. They reveal our shared humanity through humour, drama and vulnerability. Writing about our worst and best moments and everything in between can light the way and inspire others dealing with pain or adversity...which is all of us, really. Offering glimpses into our inner lives gives us in the Parkinson’s community an opportunity to support and strengthen each other.

    However you choose, express yourself! If you feel compelled, share it with others. No matter what, it’s good for you and time well spent. Who knows? Writing those first few words can be a step on a new path towards greater wellness.

    —-

    This week’s show notes were contributed by Rebecca Gifford, writer, workshop facilitator, partner in Parkinson’s to this podcast’s creator and host Larry Gifford, and this episode’s co-host. Her memoir, Cancer Happens: Coming of Age with Cancer, was published by Capital Books in 2003. She currently offers her writing workshop for non-writers to people with Parkinson’s and their families through the Parkinson Society of British Columbia.

    Feel free to 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 our special co-host this week, Rebecca Gifford.

     

    Also, thank you to the following contributors and guests.

    David Sangster, follow his “micro-blogging” on twitter @1in37Parkinsonsand his videos on YouTube 

    Sharon Krischer, follower her blog “Twitchy Woman”

    Jonny Acheson, follow him on twitter @pdinfocus

    Allan Cole, follow his blog “PD WISE”

    Matt Eagles is the creator of ParkyLife

    Ellen Bookman, follow her blog “Loving Living”

    Heather Kennedy, follow her blog “Kathleen Kiddo”

    Ava Butler, author of “Parkinson’s; A Love Story With Dementia For Dessert”

    Steven Ward

    Martino Costa

    Christie Daniels

     

    Additional Resources for Parkinson’s Writing:

    The Michael J. Fox Foundation Blog “Fox Feed”and a list of additional books and resources

    Parkinson’s Life “Eight must-read books about Parkinson’s.”

    “Perserverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”by Tim Hague

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

    The toll free hotline 1-800-565-3000

    Follow the

    • 54 min
    How did I get Parkinson’s?

    How did I get Parkinson’s?

    What are the different possible triggers for how people get Parkinson’s? Find out in this episode as I try to narrow down how the degenerative brain disorder was unleashed on me. After Niki and I chat about the “how,” my wife ,Rebecca and I begin to explore the “why?”

    If you have Parkinson’s, you may want to play along at home while you listen. Here’s a handy check list to see what factors potentially triggered your onset of PD.

    Check ALL that apply:
    I am male.
    I am older than 60 years old.
    I have parents or siblings who have Parkinson’s disease.
    Genetic tests show I carry a gene that is associated with the onset of Parkinson’s disease.
    Genetic tests show I carry a gene that is associated with brain degeneration.
    I play or played a high contact sport (Football, Hockey, Rugby, Boxing, Martial Arts)
    I have played or played high contact sports for more than eight years.
    I have experienced several concussions.
    I live or have lived near a major, busy road.
    I have worked or lived near a chemical plant.
    I have suffered Agent Orange exposure.
    I have been exposed, over a long period time or at extremely high levels to pesticides.
    I have been described as a workaholic, a Type-A personality, or stressed-out.
    I do not exercise.
    I have had a stroke.
    I have injected the MPTP strain of synthetic Heroin and suffered spontaneous Parkinson’s.
    I was born with damaged dopamine-producing brain cells.
    I died. During my autopsy, Alpha-Synuclein was discovered clumping in my brain (Lewy Bodies).

    I did not realize how much I was asking myself, “What did I do to get Parkinson’s?” until I started putting together this episode. The recent study by Cedars-Sinai Hospital in California that we discuss at the end of the episode was a real revelation for me. It suggests that people with Young Onset Parkinson’s may be born with malfunctioning dopamine producing brain cells, which leads to the clumping of the protein Alpha-Synulcein (Lewy bodies) and ultimately leads to the onset of Parkinson’s disease.

    In the episode, we hear from many qualified professionals about different reasons how Parkinson’s onsets. Sohini Dhowdhury, Deputy CEO of The Michael J. Fox Foundation, discusses why she is so interested in Alpha Synuclein research. “We know it’s the hallmark of Parkinson’s. Research and therapies targeting this protein gets to the root biological process,” Chowdhury said.  

    At UCLA, Dr. Jeff Bronstein, the head of the movement disorder clinic there and Dr Beata Ritz, professor of epidemiology at Fielding School of Public Health, collaborate on environmental factors that could trigger the onset of PD, like pesticides, both for the home and industrial use. Dr. Ritz has little doubt when she speaks on this topic, “Some pesticides are neurotoxic in a way that causes Parkinson’s disease when you are exposed over a very long time or very high levels.” In the episode, we examine the herbicide Paraquat, which is banned in many countries around the world, yet remains one of the most widely used chemicals to protect crops.

    There are many ways people can trigger Parkinson’s and many reasons why someone is diagnosed with it. Dr. Bronstein believes every case is unique, “I think of it as a humungous Venn diagram in which there and many, many different factors.”

    In the end, how I got Parkinson’s may not matter to anyone else, but me. But, for me, I’d be more comfortable knowing it was hibernating within me until I was ready for it, instead of me doing something to unnaturally cause it. In reality, I’ll likely never know what combination of things unlocked this disease. On the flip side, it’s brought me as much joy, friendship, perspective, and purpose in life  – and maybe more – than any one thing in my life.

    Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeG

    • 48 min
    Shake With Me: One Family’s PD Journey

    Shake With Me: One Family’s PD Journey

    In this episode of When Life Gives You Parkinson’s, I talk with filmmaker Zack Grant, the driving force behind the Parkinson’s documentary, “Shake with Me.” The thirty-minute film was originally intended to document how Parkinson’s impacted and inspired Zack’s mom, Debra Magid, to return to her fine art roots and begin to paint bold, colorful, big-eyed, portraits. It turned into an intimate, authentic time capsule, capturing moments and conversations as a family wrestles with a Parkinson’s diagnosis.

    Debra was diagnosed in 2012. She decided to keep the Parkinson’s a secret from her kids. Debra explains her decision in the film, noting Zack was already out of the house, but his sister Elizabeth was still living at home. Debra said, “I was afraid if she thought I was sick that she wouldn’t even go to college. That she wouldn’t launch.”

    About a year later, Elizabeth found her Mom’s medication hidden in a drawer and that secret was out. The other secret Debra was keeping was that the Parkinson’s was motivating her to paint again. As a college student, she was an aspiring product designer and had a passion for fine air. Her diagnosis triggered that passion again. “What I’ve been doing is drawing faces, interpreting what the face is, and what I see in it. Kinda of telling a bit of a story.” Debra continues, “I do feel lucky to have found such a strong voice this late in life. I think Parkinson’s is like a little bird sitting on your shoulder going, ‘tick-tock, tick-tock.’ Time is going and don’t waste what you have.”

    After explaining the diagnosis to her family, it would be several more years until Debra was comfortable sharing the Parkinson’s diagnosis with everyone in her life and eventually everyone in the world through Zack’s film. “The film was supposed to be this very small piece about the juxtaposition of her art, her diagnosis and her changing health,” said Zack. At some point, he says the family realized it was much more than that, “There was this desire to have these conversations about how Parkinson’s has affected our family.” The film touches on advancing symptoms, decisions to take more and different drugs, the struggle of who to tell, when to tell them and how Parkinson’s impacts everyone in the family, not just the individual diagnosed.

    Today, Zack, Debra and the family are more open and honest with each other, because of the experiences they shared in making film. For Zack, the film has refocused his career, “I think this film was a really ambitious way of trying to get in touch with my feelings around Parkinson’s. Now I am in this place artistically where I want to do more personal stories. And in fact, I don’t want to touch anything that I can’t find a personal way in to.”

    The film “Shake with Me,” is available for small group screenings, film festivals and for free download on Vimeo. 

    Feel free to 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 Reitmeyer

    Twitter: @Niki_Reitmayer

    Thank you to our special guests: 

    Zack Grant, Debra’s son and filmmaker. This is the official website for shakewithmefilm.com

    View his film “Shake with Me” for free on vimeo. Check out his other work at zackgrant dot com.

    Debra Magid, for sharing her Parkinson’s story and her art. Check out her website www.DebraMagid.com .

    Jim Grant, Debra’s husband

    Elizabeth Grant, Debra’s Daughter

    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

    Thanks also to our content and

    • 33 min
    Misdiagnosis

    Misdiagnosis

    I will introduce you to Jeanette and Barry Pynn. They are friends of Rebecca and mine that just went through a gut-wrenching couple of years dealing with a misdiagnosis.

    Jeanette was a runner for her whole life. After decades of raising kids, a great marriage, and dreams of traveling and enjoying the final decades of life together, Jeanette’s gait changed. “I couldn’t flatten my foot out during a run,” she says. Doctors treated her foot issues for years through orthotics and creams. Three years later, the whole left side of her body shutdown after jumping into the Adriatic Sea. Something was definitely wrong.

    After months of tests, Jeanette received a diagnosis in the Parkinsonian family that she was not expecting: Multiple System Atrophy, also known as MSA. It carries similar symptoms to Parkinson’s but is more aggressive, has a quicker progression and is deadly. The Mayo Clinic reports people with MSA typically live seven to ten years after symptom onset. This is an important fact that Jeanette and Barry did not know and a vital detail that her neurologist failed to mention.

    Barry remembers leaving the appointment somewhat encouraged, “When we heard that it might be a relative of Parkinson's, it was actually it was a relief.” 

    That relief quickly gave way to fear, when Jeanette was waiting for her new prescriptions at Costco surfing the internet, “I was reading up on the disease and I looked over at Barry and I said, I don't think this is very good. And he said, In what way? And I said, I think you better read this because I can't I can't really explain it to you.”

    After two years of wrestling with the diagnosis, the disease, and her own impending death, Jeanette and Barry reached out for help. They were in search of support, community, information, context and understanding. Rebecca and I met Barry in the Spring of 2019 at the annual meeting for the Parkinson Society of British Columbia. They were listeners to the podcast and had traveled from Bowen Island, because they read we would be at the event and they wanted to connect. We chatted, they shared their story, and soon we discovered we got along. We became fast friends. And in the back of our heads, we understood we were entering into a friendship with Jeanette, at least, was a proposition that wouldn’t likely survive the next decade.

    Rebecca’s cell phone rang on a Saturday morning in September last year. It was Jeanette. She had seen a new neurologist, a movement disorder specialist, at the UBC Brain Centre. “She said that it's most likely certain that I have Parkinson's disease and not MSA.” Jeanette continued through tears, “Whoever thought they'd be so happy to have Parkinson’s?”

    The misdiagnosis of MSA is certainly not rare. A 2015 study featured on Neurology.org examined 134 autopsied brains of people who were clinically diagnosed MSA while living and only 63% had the correct diagnosis at death.

    As it relates to Parkinson’s disease, a new Parkinson’s UK study shows 25% of people with Parkinson’s are misdiagnosed. A third of those were given medication for an illness they didn’t have and a 10% underwent a needless operation or procedure.

    Misdiagnosis is likely to continue until researchers discover reliable biomarkers to aid in the diagnosis of Parkinson’s and related disease.

    Feel free to 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 Reitmeyer

    Twitter: @Niki_Reitmayer

    Thank you to our special guests: 

    Jeanette Fisher Pynn

    Barry Pynn

    Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home

    Dr. Jonathon Squires at Djavad Mowafaghian Centre for B

    • 54 min

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