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| Titre | Date | Durée | |
|---|---|---|---|
| From Awareness to Action: The Final Episode | 20 Mar 2024 | 00:10:35 | |
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: Larry@PDAvengers.com
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Dialing in DBS and Sorting Through the Data with Rune Labs CEO Brian Pepin | 23 Jan 2024 | 00:32:59 | |
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Biomarker Breakthrough w/ Debi Brooks CEO of The Michael J Fox Foundation | 19 Apr 2023 | 00:33:14 | |
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
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage: Travelling and Catching Up With Family | 13 Feb 2019 | 00:33:04 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
I was diagnosed with Parkinson’s in August 2017. I haven’t seen my brothers Bruce and Dan or my sister Tracy since I received the news. That changed on January 31, 2019. Our Mom, who lives in Florida, invited us all down to stay in a beach house on Anna Marie Island on the Gulf Coast near Tampa. My siblings arrived separately along with some of their kids who now have their own kids. There were 18 of us in total.
I was nervous.
We haven’t vacationed together in 20 years. When we do get together for holidays or special events it is separated by years and we’re only together for a few hours at a time. And still, inevitably, someone ends up crying.
But even before the family reunion part, I was nervous about flying. Vancouver B.C. to Tampa, Florida with a stop in Minneapolis, Minnesota is a long stretch of flying. I was concerned about timing my medication correctly as we skipped through time zones. I was certain my feet and legs would cramp and stiffen on the flight. This would be my first time traveling with walking sticks. And what if I start to tremor? What if I have an anxiety attack in the airport? What if…
Deep breath.
I can tell you now the anticipation was far more anxious than the trip. Everything was great.
Here’s how I handled the airport.
I wanted to be comfortable and confident, so I wore layers of loose fitting clothing including a shirt with a pocket for easy access to my passport and boarding pass. I used a backpack for carry-on items including a book, phone chargers, water, healthy snacks, and lots of Levodopa. (Do not pack your meds in checked baggage. I was happy to have it with me when we ran into seven hours of delays on our return trip.) Anytime I am in crowds, I use my walking sticks, so they came along for the ride too.
When we checked in at the airline counter, I alerted them that I have Parkinson’s and would like to have a wheel chair or golf cart assistance at my layover in Minneapolis. I wanted to make sure I made the connection and didn’t exhaust myself traversing through four concourses. I also traveled with my wife and son, which gave me extra eyes and ears and peace of mind if I lost focus or became disoriented maneuvering the airport hallways and crowds. We always opted to pre-board to take extra time to get on board and get settled.
Once on the plane, I sat in the aisle seat to give myself quick access to stand up if I started to feel cramping or an urgent need to use the facilities. I collapsed my walking sticks and put them in the overhead storage. I stretched my feet and legs as much as possible during the flight and drank water to stay hydrated. The days we flew were long days, and my pill schedule was out of whack a bit, but I was able to take it in stride and slept like a baby each of those nights.
The reunion was great. Lots of stories, laughter and reconnecting. On this episode, you’ll hear more of my journey to Florida including a stop at Universal Studios and our attempt to get an Attraction Assistance Pass (AAP) to avoid long lines and a discussion with my brothers, sister and me. I ask them what it’s like seeing me in the flesh with Parkinson’s, how PD has impacted them and their families, and we try to recalibrate our relationships with each other. They also pepper me with a couple behind the scenes podcast questions you might enjoy.
If you have a comment or question about the podcast, you can email us:parkinsonspod@curiouscast.ca
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmayer
Twitter: @Niki_Reitmayer
Special thanks to Bruce Gifford, Dan Gifford, Tracy Cherry, Marty Gifford, and Rebecca Gifford
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Parkinson’s and the Caregiver’s Journey | 11 | 06 Feb 2019 | 00:51:14 | |
In this episode of When Life Gives You Parkinson’s we explore the role of the caregiver. Seeing as I’m a person with Parkinson’s and not a caregiver, my caregiver and wife Rebecca is featured prominently along with my co-host Niki Reitmayer and other caregivers Noel MacDonald and John Parkhurst. At the end of the episode, I chime in with a quick interview with Dr. Robert Duff about what caregivers need to do to make sure they’re taking care of themselves. At the end of the episode, Niki mentions a few resources for caregivers from Parkinson Canada which can be found here:
Caregiving Webinar https://vimeo.com/168664929
Caregiver “Am I in Balance?” worksheet https://www.parkinson.ca/wp-content/uploads/Am-I-in-balance-taking-care.pdf
Aside from being a wife, caregiver, mom, home school teacher, family chef and chauffeur, Rebecca is a writer. In fact, she’s a great writer. This week, for the podcast notes, I invited her to put pen to paper to express in her own words what it means to be a caregiver to someone with Parkinson’s.
The following is written by Rebecca Gifford, caregiver and wife of Larry Gifford
It happens all the time, all over the world. Two people love each other. You build a relationship, a partnership, and ultimately share a commitment and a life. You grow and make plans, hopeful for the future. Somewhere in the back of your head you know that something could happen that feels like the universe having a good chuckle at your expectations. It’s easy to dismiss these thoughts as “not right now” or “perhaps when we’re older.”
Then one day you hear a faint belly laugh.
One of you is diagnosed with something frightening, and everything changes. Of course everything shifts for the person with the disease, but the changes are as profound for those closest to them.
Just as all families who are faced with a diagnosis do, we discovered a new path the day Larry was diagnosed with Parkinson’s disease. As his partner and wife, when it appeared before me I took his hand so we can walk it together.
Sometimes it is joyful and beautiful—the opportunity to tell our story, to make a difference and connect with a remarkable community; the opportunity to offer life-shaping lessons to our son; a chance to clarify, simplify and rebalance our life.
Sometimes it is sad or infuriating or frightening—grieving our pre-PD life, seeking balance in an ever-changing situation, adjusting to Larry’s uneven physical and energetic capacities, shifting the balance of our parenting roles, and facing endless uncertainty. Larry and I are reexamining and redefining our roles in our marriage, knowing we likely will need to do this again and again as the disease progresses. We are re-prioritizing our daily lives, while also discovering that often self-care means we can’t meet the expectations of those around us, including each other. And on and on.
Those who have been partners of people with Parkinson’s for much longer than I have know that the above lists will get much longer before the food truck pulls away. For us and so many, the growing pains are real.
We all know that everyone’s journey is different. But as partners and most trusted caregivers, we have a front row seat for our loved one’s experience. We may not be experiencing the disease directly, but we have an important role. We aren’t just helpers, healers and emotional support. We are the witnesses, the observers. We see their highs and lows, are inspired by their strength and humor, and are empathetic to their worries and grief. We are sitting beside them as they drive the rollercoaster, an extra pair of eyes and ears on the track. This can be just as challenging, but also just as enlightening.
We can and are supporting them and choosing the spot beside our dear ones. Our journey isn’t easy, but it’s full of all the thrills and lessons that a rich life brings.
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 Noel MacDonald, Marty Gifford, John Parkhurst,
Dr. Robert Duff from The Hardcore Self Help Podcast
Website: https://www.duffthepsych.com
You Tube: https://www.youtube.com/duffthepsych
Twitter:https://twitter.com/DuffThePsych
Facebook: https://www.facebook.com/duffthepsych/
Instagram: http://www.instagram.com/duffthepsych
And special thanks to my wife and caregiver Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Peace of mind: Insights from a neuropsychologist | 30 Jan 2019 | 00:25:26 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
Parkinson’s doesn’t necessarily lead to cognitive impairment, but it can. The threat alone though makes think that every time I forget a word, have trouble with complex issues or can’t complete my Sudoku that I might be leaking brain power. Likely, I’m just freaking myself out. However, for peace of mind, there are ways to monitor and test cognitive function. I know in one my less grounded moments of perceived cognition erosion, my neurologist ran me through a battery of memory exercises. I checked out fine.
Additionally, there neuropsychologists who work with neurologists to help evaluate cognitive abilities. Dr. Robert Duff, host of the Hard Core Self Help podcast, is a neuropsychologist who works with Parkinson’s patients on a regular basis. In this Extra Dosage, Dr. Duff and I speak candidly about Parkinson’s possible impact on the brain, mental health issues with Parkinson’s, what people can expect if going through a battery of neuropsych tests, and what he’s learned about PD after treating hundreds of patients. Additionally, he explains why it might be beneficial for everyone with Parkinson’s to take up a new hobby.
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
Special thanks to Dr. Robert Duff from The Hardcore Self Help Podcast
Website: https://www.duffthepsych.com
You Tube: https://www.youtube.com/duffthepsych
Twitter: https://twitter.com/DuffThePsych
Facebook: https://www.facebook.com/duffthepsych/
Instagram: http://www.instagram.com/duffthepsych
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Parkinson’s Doesn’t Have to be a Career Killer | 10 | 23 Jan 2019 | 00:54:26 | |
In this episode, Niki and I talk to my colleagues and bosses about how their adjusting to my PD diagnosis, get advice from my neurologist Dr. Jonathon Squires, Neuropsychologist Dr. Robert Duff, and employment lawyer Lior Samfiru. I also chat with Jim Redmond about being a teacher with PD and Jonny Acheson about adjustments he’s had to make as an emergency room doctor who was diagnosed with Parkinson’s.
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 Kathryn Stewart, Dustin Collins, Dr. Jonathon Squires, Jim Redmond, Jonny Acheson, and Troy Reeb.
Also Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/
Follow them on Twitter
Brian Stever @SteverBrian
Taylor MacGillvary @Taymacgillivary
Jeremie Saunders @JeremieSaunders
Dr. Robert Duff from The Hardcore Self Help Podcast
Website: https://www.duffthepsych.com
You Tube: https://www.youtube.com/duffthepsych
Twitter:https://twitter.com/DuffThePsych
Facebook: https://www.facebook.com/duffthepsych/
Instagram: http://www.instagram.com/duffthepsych
Lior Samfiru B. A. (hons.), LL.B., partner Samfiru Tumarkin LLP
Website: www.stlawyers.ca
Twitter: https://twitter.com/stlawyers
And special thanks to my wife Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
Here is a link to an article about Young Onset Parkinson’s which also discusses employment
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Hope, Fear, Frustration and Levodopa | 16 Jan 2019 | 00:21:20 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
One of the main intentions behind this podcast was to demystify the Parkinson’s experience by sharing my story, the stories of people I meet along my journey and encourage others to share their Parkinson’s stories. When we share stories, we raise awareness of Parkinson’s, which attracts more donor dollars, to do more research, which hopefully one day will lead to finding a cure. I am encouraged from the responses I have received and am happy to report that as a community, those of us with Parkinson’s are sharing more of what we’re going through.
To that end, in this Extra Dosage episode, I want to introduce you to Jim Richmond. Jim, 47, is a high school teacher and volleyball coach. He was diagnosed three years ago. Even though we are the same age and have some similar experiences, our stories are uniquely our own. I chat with Jim about symptoms, treatments, lifestyle changes, and everyday efforts to keep the disease from taking hold. After our conversation, Jim emailed to say he thought in our discussion he came across as more negative than his typical positive self. To me his story is authentic, honest and like most of us with Parkinson’s an ever adjusting mix of hope, fear, frustration and Levodopa.
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
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 Jim Redmond.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Fatherhood and Parkinson’s | 9 | 09 Jan 2019 | 00:46:32 | |
In this episode, you will meet my 9-year old son Henry, hear his infectious laugh and find out the one burning question he has about Parkinson’s. I think Henry might just want a normal Dad, not one with Parkinson's , my co-host Niki Reitmayer and my wife Rebecca try to convince me otherwise.
On Saturdays, Henry and I go on adventures. We hang out, run errands, laugh, talk, and just spend time together. Father-son time means even more for me since my Parkinson’s diagnosis. I don’t always have the energy or ability to do the things we used to do and that will only get worse over time, so when we get the chance to connect, I relish it.
Parenting is hard regardless if you have Parkinson’s or not. Parky can make things harder, however, it also allows me to demonstrate how I deal with adversity, teaches Henry empathy, the importance of philanthropy, and the value of quality time over quantity time.
You will also hear from fellow father with PD Jonny Acheson about how he talks to his kids about Parkinson’s and how PD has changed how he approaches parenting. Singer Songwriter Emily Chambers was 12-years old when her dad was diagnosed and TeaParky.com creator Michael Chueng was 11. They both talk about what it was like to grow up with a Dad who has Parkinson’s and offer advice to my son Henry.
Wondering how to talk to kids about Parkinson's? Check this link out https://www.parkinson.ca/wp-content/uploads/Talking-to-Children.pdf
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 Dan Gifford, Tracy Cherry, Jonny Acheson, and…
Emily Chambers. You can check out her music at www.emilychambers.caand follow her for future alerts about “Shake, Shake, Shake.”
You Tube: https://www.youtube.com/emilychambersmusic
Twitter: https://twitter.com/em_chambers
Facebook: https://www.facebook.com/emilychambersmusic
Instagram: https://www.instagram.com/em_chambers/
Michael Chueng. Check out his site www.teaparky.comand follow him.
Twitter: https://www.instagram.com/teaparkydotcom/
Facebook: https://www.facebook.com/TeaParky/
Instagram: https://www.instagram.com/teaparkydotcom/
And special thanks to my son Henry and to my wife Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Happy New Year! | 02 Jan 2019 | 00:04:24 | |
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Christmas Greetings | 26 Dec 2018 | 00:04:25 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
‘Twas the night before Christmas and all through the home
One creature was stirring, it was Dad on his phone.
Alone in the living room at half past three,
Parkinson’s awoke him with an urge to pee.
The kid was restless and then crashed in his bed,
Visions of new race cars zoomed through his head.
Mom awoke to a clatter, in bed all alone,
She recognized the noise as Dad’s cramping foot moan.
He tremored and shook down his arms and his legs,
Anticipating breakfast and Christmas casserole eggs.
Levodopa was downed and he stretched to the sky.
He exercised reluctantly and let out a big sigh.
While he was distracted, Santa sneaked in.
Gifts were distributed by the tree with a grin.
And then, after breakfast, they begin to unwrap
Dad looks off in the distance, ready to nap.
Christmas is full of love and tradition,
Enjoyable for all, despite Dad’s Parkinson condition.
A heartfelt Merry Christmas from the whole gang at When Life Gives You Parkinson’s. We’ll be back on January 8th will a new full episode of the podcast focusing on Parkinson’s and Fatherhood.
If you have Parkinson’s there are few things our friends at The Michael J. Fox Foundation and Parkinson Canada recommend you consider over the holidays.
Do not forget to exercise. Keeping active will help boost your spirits and keep your sleep schedule intact.
Take your medication as prescribed. This is especially difficult and confusing when you cross time zones. When traveling take an updated copy of your medication list and bring medications in their bottles in your carry-on when flying.
Mind your diet. A healthy Parkinson’s diet is full of fruit and vegetables. Candy and cookies are tempting treats, and family dinners make is easy to overdo it on food and wine. As with everything, moderation is the key. Drink lots of water and remember your balance issues will only increase with alcohol consumption.
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
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 my wife Rebecca and son Henry.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Search for a Cure Starts With Fundraising | 8 | 19 Dec 2018 | 00:43:50 | |
In this episode of When Life Gives You Parkinson’s, I talk to people behind several Parkinson’s fundraisers, learn about their experiences with the disease and meet the researchers who benefit from the funds raised. I also let you follow me into Dr. Farrer’s lab as I donate my DNA.
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:
Emily Chambers. You can check out her music at www.emilychambers.ca and follow her for future alerts about “Shake, Shake, Shake.”
You Tube: https://www.youtube.com/emilychambersmusic
Twitter: https://twitter.com/em_chambers
Facebook: https://www.facebook.com/emilychambersmusic
Instagram: https://www.instagram.com/em_chambers/
Michael Chueng. Check out his site www.teaparky.com and follow him.
Twitter: https://www.instagram.com/teaparkydotcom/
Facebook: https://www.facebook.com/TeaParky/
Instagram: https://www.instagram.com/teaparkydotcom/
For details on Porridge for Parkinson’s and The Pacific Parkinson’s Research Institute www.pacificparkinsons.org and follow them.
Twitter: https://twitter.com/PPRI__
Facebook: https://www.facebook.com/PacificParkinsons/
Drs. Matthew Farrer, Silke Cresswell, and A. Jon Stoessl at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth.
Dr. Farrer’s researchers Jesse Fox and Emil Gustavason.
And special thanks as always to my wife Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Understanding the Gut-Brain Connection | 12 Dec 2018 | 00:16:14 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
The appendix. Until November 1, 2018, I didn’t know it served a purpose in the human body. Global Newsand other news outlets around the world reported on an exciting research discoverythat people who had their appendix removed early in life had a lower risk of getting Parkinson’s later in life.
After some research of my own I discovered the appendix actually helps the immune system detect and eliminate harmful microorganisms, while regulating gut bacteria.
What’s the connection to Parkinson’s? Well, it turns out a healthy appendix contains alpha-synuclein. Alpha-synuclein is the key protein that builds up in the brains of people with Parkinson’s.
The news about the appendix and Parkinson’s further confirms much discussed theories that there is a direct connection between gut health and brain health.
One of the researchers focused on better understanding the importance of gut health and our microbiome as it relates to Parkinson’s disease is Dr. Silke Cresswell. She is an assistant professor in the division of Neurology at UBC. In this Extra Dosage episode of When Life Gives You Parkinson’s I sat down with her at the Djavad Mowfaghian Centre for Brain Health at UBC for the Pacific Parkinson’s Research Centre. We discuss microbiome, the appendix, diets, constipation and what she’s uncovered in her research.
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
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 Dr. Silke Cresswell and the Djavad Mowfaghian Centre for Brain Health at UBChttps://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Is Trichloroethylene an invisible cause of Parkinson’s? | 29 Mar 2023 | 00:43:24 | |
Trichloroethylene (TCE). You cannot see it or smell it. It could be in the air you breath, the water you drink, and the food you eat. It is a carcinogen and is linked to clusters of cancer and Parkinson’s. In Journal of Parkinson’s Disease, Dr. Ray Dorsey at the University of Rochester and eleven colleagues have published a research article asking the question “Is Trichlorethylene an invisible cause of Parkinson’s?” The authors go on to make a convincing case.
Dr. Dorsey joins the podcast to explain the dangers of TCE, how it seeps into ground water, your home, schools, and office buildings, how to protect yourself, and where you can look to see if a TCE Superfund site is near where you live.
KEY LINKS
BOOK: ENDING PARKINSON’S DISEASE; A PRESCRIPTION FOR ACTION
JOURNAL OF PARKINSON’S DISEASE (SCIENTIFIC JOURNAL)
Trichloroethylene: An Invisible Cause of Parkinson’s Disease?
THE GUARDIAN (UK)
Rates of Parkinson’s disease are exploding. A common chemical may be to blame (TCE)
Secret files suggest chemical giant feared weedkiller’s link to Parkinson’s disease (Paraquat)
NEW YORK NEWSDAY (NY/USA)
A NEWSDAY INVESTIGATION: The Grumman Plume; Decades of Deceit
CBS MORNING (USA)
Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades later
LOS ANGELES TIMES (CA/USA)
Is a common industrial chemical fueling the spread of Parkinson’s disease?
THE TORONTO STAR (ON/CAN)
Dry cleaning chemical linked to Parkinson’s in international study (2011/Canada)
DAYTON DAILY NEWS (OH/USA)
VOICES: How toxic industrial spills have contaminated our groundwater
EPA FACT SHEET | TRICHLOROETHYLENE EPA SUPERFUND HOME PAGE WIKIPEDIA
CANADIAN FEDERAL CONTAMINATED SITES INVENTORY (FCSI) CONTAMINATED SITES HOMEPAGE
Much gratitude for your content
A Civil Action: Touchstone Pictures, Paramount Pictures, and Wildwood Enterprises, Inc
SaferChemicals on YouTube WATCH “TOXIC CHEMICAL LOBBY: EXCLUSIVE LEAKED FOOTAGE”
EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Exercise is a Real Prescription for Parkinson’s | 7 | 05 Dec 2018 | 00:52:04 | |
I have never been very athletic. I have never been excited by thinking about or participating in exercise. The idea of a daily workout, gym memberships, exercise classes or scheduled physical activity of any kind has always been something other people do.
In August 2017, my neurologist Dr. Jonathon Squires at the Djavad Mowafaghian Centre for Brain Healthat UBC gave me a prescription for levodopa-carbidopa and a serious recommendation to exercise.
Dr. Squires told me, “The only thing we know so far that slows the progression of Parkinson’s disease is physical activity. It does help control the symptoms and it does help slow the progression as far as we know. So it’s very important.”
Never one to accept exercise as the answer suggested the medication might be enough. Dr. Squires rebutted, “In some ways, I feel like all the medications that we use are really just to enable people to exercise.”
That’s when I realized this exercise thing is real, but I wanted to know why. I sought out Dr. A Jon Stoessl. He’s the head of Neurology at UBC, co-director of the Centre for Brain Health and one of the neurologists that has been researching the benefits of exercise for people with Parkinson’s disease. I asked if there was anything else aside from exercise I could explore. Anything. Anything?
Dr. Stoessl didn’t hesitate or cushion the blow. The answer was no.
He explained, “In fact, we don’t have any medical treatments that have been shown to have an impact on disease progression. So, we can treat the symptoms, but we don’t end up treating the underlying disease. Exercise may actually be the way to do that.”
Research results suggest an exercise routine that consists of a combination aerobic and resistance training, four days a week, for a half-hour each day. Dr. Stoessl told me if I can still carry on a conversation while I’m working out, I’m not working out hard enough. He also offered this advice, “Do what you hate the least, because it’s no good someone prescribing you a half-hour on the treadmill every day, if you will never get on a treadmill.”
So what exercise do I hate the least? In this episode of When Life Gives You Parkinson’s I explore a variety of exercises in search of one or some that I can commit to. I lace up boxing gloves for a Rock Steady Boxing class in at Impact Parkinson’s in New Westminster. Trainer Robyn Murrell takes people with Parkinson’s through circuit training, “You’ve got your foot work, hand-eye coordination, balance, cognitive, and speed. They can all relate somehow to all the different symptoms of Parkinson’s.” She notes the results are beyond the physical improvements, “It gives them a lot more confidence. I think that’s the biggest thing that I see.”
Through my search for an exercise right for me, I visit Rain City Fitness to try Cross Fit with Hilary Vanderliek. She was diagnosed with Parkinson’s when she was 24, “I love Cross Fit because it’s given me the opportunity to realize my potential.”
I also begin find physical activity and a way to retrain my brain how to walk again through Parkinson’s specific Physiotherapy. Naomi Casiro, BSc(Kin), MPT, Certified PWR! Is the founder of NeuroFit BC, “With Parkinson’s there something we call motor weakness. You know, your muscles are there and they’re ready to function, but the signals aren’t getting through. They’re there, they just aren’t being utilized. They really want to be woken up. Right?” Casiro says waking up those motor patterns through Physiotherapy often leads to people’s functions drastically improving.
All of these experiences from the boxing ring to the Neurologist’s office have been overwhelmingly positive and encouraging. They’re all realistic and want to help me and others with Parkinson’s live our best life. Now it’s up to me to commit to being physically active, for the rest of my life, for the best chance to keep Parkinson’s from progressing faster than it wants to.
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:
My fellow partners in Parkinson’s: Sugar Jay Siddell and Hilary Vanderliek. Check out Hilary’s mental health initiative “The Thought Project.”
Robyn Murrell and Impact Parkinson’s in New Westminster, British Columbia. Follow them on Facebookand Twitter @ImpactParkinson.
Rain City Fitnesson Instagram @raincityathlsand Cross Fit trainer Liz Carrier.
Naomi Casiro and NeuroFit BC. On Facebook https://www.facebook.com/NeuroFitBC/and YouTube https://www.youtube.com/channel/UC5kLaXx3PMslzSfxVcieM2A
Drs. Jonathon Squire and A. Jon Stoessl at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth.
And my wife Rebecca Gifford
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Puppies and Parkinson’s | 28 Nov 2018 | 00:12:15 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
It’s been nearly six years since our family lost our beloved beagle Pepperjack. Rebecca and Henry have been pining for a dog for years. Unfortunately, we tend to rent homes that have strict no pet policies. To our surprise and delight, our current landlord recently had a change of heart and suddenly was amenable to a small dog. The excitement in the Gifford house was palpable. For once, the trembling and shaking was coming from them and not me.
With the green light to get a pup, the hunt was on. Rebecca was the General of “Operation Puppy Procurement.” Phones calls were made, emails written, DMs and texts were sent into the ether. Within 48 hours we went from dog less to dog obsessed. We traveled 45 minutes to a chicken farm where we fell in love with a small, adorable, 8 week old puppy. She was a Cavalier, Pug, French Bulldog, and Boston Terrier mix. By the time we arrived home, we had named her Luna Love Gifford (an homage to a favourite Harry Potter character), spent hundreds of dollars at the pet store, and our cheeks were sore from smiling so much.
Puppies are tough. We knew that. We were ready for it. We warned our 9-year old son. We’d done this before and knew it was hard work.
But…
I didn’t have Parkinson’s when we adopted Pepperjack. The disease challenges my walking and balance, increases anxiety, makes it difficult to sleep, and symptoms only intensify with stress. A five pound puppy with boundless energy, racing around my feet, needing to go outside throughout the night also challenges walking and balance, increases anxiety, makes it difficult to sleep and frankly, stressed me out.
After two weeks, Rebecca and I looked at each other one evening and we both knew we had rushed into puppy parenthood without proper consideration of the other new member of our family: Parkinson’s. Through tears of sadness and waves of embarrassment, we quickly found Luna a new forever home. It was a wake-up call that Parkinson’s plays a part in every decision we make. And will for the rest of our lives.
In this Extra Dosage episode, Niki Reitmayer invites Rebecca and I into the studio to talk about our puppy predicament and the lessons we learned
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
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 my wife Rebecca Gifford and to Luna Love Gifford wherever you are.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Popping Pills, Swapping Stories – Inside a Parkinson’s support group | 6 | 21 Nov 2018 | 00:36:06 | |
It’s hard to admit it when you need help. It’s even harder to make the phone call, ask questions, commit to showing up, walk into a room full of strangers and share things that still remain secret to the closest people in your life.
I’d never been in a support group before I was diagnosed with Parkinson’s. I didn’t know what to expect. I wondered how my Parkinson’s would measure up and if I was too young, too healthy, or too whatever to be accepted by those who bravely showed up for these meetings long before I did. Maybe I could tough it out. Maybe I could deal with this on my own.
Maybe I was being ridiculous.
10 million of us have Parkinson’s. We’re all dealing with this interesting, unpredictable, degenerative, life altering, sucky disease. Those of us with PD, know the struggles, the questions, the ups and downs and each us of deserve support.
Turns out great things happen when five or ten of us cram into a conference room each month. I’ve met new friends: John, Linda, Lee, AJ, Richard and Tony. Some are newly diagnosed, others have been living with PD for many years. Each gathering we laugh, share stories, ask questions of each other, offer unsolicited advice, and nod knowingly as one-by-one we discuss medication, symptoms, and struggles.
We don’t always agree on the best way to approach the disease. Some have found peace with it and others would like to tear it to pieces. Some befriend it, others bemoan it. Some accept it, others reject it. Some are grateful for the gifts it’s given them, some shower it with profanity. Some offer it a name like Parky, while others can barely utter the “P” word to begin with. It’s okay. People in your support group meet you wherever you are. You might be depressed, inspired, angry, confused, exhausted, or content. It doesn’t matter. I… they… we will support you and you deserve the support.
In this episode of When Life Gives You Parkinson’s, I take you inside my support group to demystify the experience and give you a first-hand perspective of what it’s like. Co-host Niki Reitmayer talks to Kelly Williams, a clinical resource nurse at the Movement Disorder Clinicin Winnipeg, about support options for people who live in rural areas many hours from traditional support services. For the first time since my diagnosis, my wife Rebecca discloses she is now ready to explore support group options for care partners.
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 Caroline Wiggins at the Parkinson Society of BC, Kelly Williams at the Movement Disorder Clinicin Winnipeg, my support group Lee, Richard, John, AJ, Linda, and Tony, and my wife Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Lights! Camera! Action! Parkinson’s! | 14 Nov 2018 | 00:19:05 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
I took piano lessons in college. I really enjoy stumbling upon a piano, sitting down and letting my fingers find the music. I’m not great and I don’t have regular access to a piano. So, last winter when I sat down at a piano for the first time in a while, I was surprised and disappointed to discover Parkinson’s had stolen what little piano talent I had and made it into a musical mush. My brain doesn’t communicate as fast to the right side of my body as it does to the left, so while my left hand danced across the keys, my right hand tripped and stuttered like a baby fawn learning to walk.
I can only imagine the frustration and exasperation I endured would be magnified exponentially if I was a professional musician. And that’s the premise for The New Music, a new Irish feature filmabout a classical pianist with Young Onset Parkinson’s Disease (YOPD), a rare form of Parkinson's disease affecting those under sixty. The New Music follows the struggles of Adrian, a gifted classical musician, who discovers he has YOPD. Despite this debilitating condition, Adrian (played by Dublin actor Cilléin Mc Evoy) joins a punk band as a keyboard player and rediscovers his life through music and friendship.
Writer and Director Chiara Viale has been working closely with Young Parkinson's Irelandto make sure the film accurately portrays the Parkinson’s experience. Viale and lead actor Mc Evoy join Niki Reitmayer and I on this episode of When Life Gives You Parkinson’s to discuss the movie, Parkinson’s and how you can help them finish the film.
If you are a musician with Parkinson’s and want to share your story with us, please email parkinsonspod@curiouscast.ca
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
FollowThe New Music Film
Twitter:@thenewmusicfilm
Facebook:Facebook.com/TheNewMusicFeature
Instagram:@thenewmusicfeature
YouTube:The New MusicFilm
Donate to The New MusicFilm GoFundMe page
Thanks to writer and director Chiara Viale and lead actor of the film Cilléin McEvoy.
Thank you to the Dutch punk-rock trio Antillectualfor use of their song “So Much More.”
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Shaking the Stigma of Depression and Anxiety | 5 | 07 Nov 2018 | 00:44:11 | |
Since my diagnosis, I’ve experienced panic attacks, anxious days of feeling inadequate and stretches of melancholy and mourning my life before Parkinson’s. In this episode of the When Life Gives You Parkinson’s podcast we explore anxiety and depression as symptoms of Parkinson’s disease and how people are dealing with these and other hidden symptoms of Parkinson’s.
“I was afraid the building would collapse and I wouldn’t be able to get help.” Hilary Vanderliek,our guest this week, lists anxiety as one of her “hidden” or non-motor symptoms of Parkinson’s disease.
“I usually start panicking if I feel like I can’t get a hold of somebody or I need something that I can’t have. Whether it is someone helping me, or getting water or pills, or changing my outfit so I’m more comfortable, or me needing to go to the hospital because they’ll be able to help whatever issues I’m having.” Issues she describes as feeling stuck, shaking so bad she can’t walk or being so weak she can’t move to get to where she needs to go.
When it comes to Parkinson’s most people are aware of the tell-tale tremors. I, and others, also have issues with our gait which makes walking more difficult. People with Parkinson’s are slow to initiate movement, have balance issues, and muscle rigidity. But, those are all motor symptoms you can see.
There are a whole host of other symptoms people with Parkinson’s deal with that you may never know. Parkinson Canada details 27 of these symptoms on its website including difficulty swallowing, pain, sexual dysfunction, and insomnia. Anxiety and depression also made the list. Experts now say more than half of all people with Parkinson’s will develop anxiety or depression.
Depression and anxiety in people with Parkinson’s is not solely a reaction to the diagnosis. Most often it’s due to changes in brain chemistry, circuits and neural pathways that control your mood.
Long before his Parkinson’s diagnosis, the initial symptoms for Tony Dawson, 76, were more psychological than physical. “They tended to circle around a feeling of depression which I had not been used to feeling earlier in my life.”
And it’s not just a case of, “Oh, I feel bad today.” Everyone gets that feeling from time to time. “(Depression) is that persistent feeling and sadness that you have,” says Kimberly Singian RN, who authored a paper in the Canadian Medical Association Journal on depression and Parkinson’s. “Feeling fatigued, even feelings of guilt and being worthless. Your sleep can be affected, your appetite and also your weight.”
Symptoms of anxiety may include nervousness, worrying, feeling jittery, and may not have a direct cause, or may seem to be an over-reaction.
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 Hilary Vanderliek, Tony Dawson, Jonny Acheson, Kimberly Singian RN, and my wife Rebecca Gifford.
Here is a link to Hilary’s website.
Here is a link to the YouTube video on the hidden symptoms of Parkinson’s disease mentioned by Jonny in the podcast
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | I’m the World’s Leading Expert in My Parkinson’s | 31 Oct 2018 | 00:23:29 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
I get asked a lot questions about Parkinson’s disease. Online, in person, over email and on social media I have made myself vulnerable and available. I’m happy to discuss my experience and my limited knowledge of the disease, symptoms and its treatments. I’m not an expert in Parkinson’s, but I am the world’s leading expert on MY Parkinson’s. This week, my brain power was put to the test by students at Kwantlen Polytechnic University. Dr. Dianne Crisp invited my podcast co-host Niki Reitmayer and me into her classroom. She teaches a psychology course all about brain science and dedicates many hours of class to Parkinson’s disease. We recorded our question and answer session with students. They asked many questions about onset triggers, L-dopa, sleep, family, symptoms, treatments, my future, and more.
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 Kwantlen Polytechnic Institute and Dr. Dianne Crisp.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Search for Sound Sleep: A Virgin Voyage with Cannabis Oil | 4 | 24 Oct 2018 | 00:41:45 | |
One of the more common symptoms for people with Parkinson’s is trouble sleeping. Some of us can’t get to sleep, some can’t stay asleep, while others are awaken by tremors, painful dystonia cramping or realistic nightmares.
I can’t stay asleep.
My sleeping journal is more of an awakening journal. One day it reads “up at 3a,” the next “up at 1a,” followed by “up at 3a, up at 3:30a, and up at 4:20a.”
I’ve tried Melatonin, Magnesium Glycinate, light therapy, aromatherapy, silence, music, meditation, reading, more levodopa, later bedtimes, earlier bedtimes and the list goes on.
Sleep is important for everyone. When you don’t get enough sleep you are less productive, less attentive, less present, less creative, less active, less everything it seems except tired. WebMD suggests it also puts you at “greater risk for depression, heart attack, stroke, high blood pressure, diabetes and death.” I know you’re not supposed to believe everything you read on the internet, but it’s WebMD. Right? I’m also told by researchers that sleep is the time your brain needs to redistribute chemicals into all of its nooks and crannies and for your mind and body to assimilate after each day’s journey. (Both points seem especially relevant when you have a degenerative brain disease which is triggered by the lack of production of the brain chemical dopamine.) One of my doctors suggested if I don’t get regular REM sleep, I am increasing my risk of a mental meltdown. Needless to say, sleep is an issue that I must address.
My neurologist suggested Mirtazapine, an antidepressant that is also apparently a good sedative. It also causes an increased appetite and weight gain. Neither of which I need right now. I suggested an alternative.
As Canada legalizes Cannabis, I asked, “What about CBD Oil?” For transparency, I’m not a pot smoker. I have before, I inhaled, and I liked it well enough. But, I never smoked weed regularly and have not recently.
My neurologist didn’t discourage me and suggested it wouldn’t hurt to try, but it is trial and error.
I did some homework. In discussions with users and by reading about CBD Oil, there are a few things I learned.
Cannabis is hit and miss. Some in the Parkinson’s community swear by it and others who’ve tried it never found it to be effective. I’ve heard from several sources it’s a 50/50 proposition.
There is no prescription. How much to take, when to take it and how to take it are up to you to discover and debate. It’s fairly intimidating. Some days I feel like I couldn’t make ramen without the instructions on the package. I brought this up to Barinder Rasode, the founder of the National Institute for Cannabis Health and Education. She agreed with me, “I share your frustration about no knowing how much or what type of Cannabis to take.” She had to do trial and error when figuring out her own regiment of CBD oil for her sleeping issues. Rasode is bullish on cannabis as it relates to treating symptoms of Parkinson’s disease, “It reduces both the tremors and some researchers think it actually saves the neurons from further damage caused by Parkinson’s.” She admits those findings are anecdotal at this point, but is hopeful for more scientific trials in the wake of legalization.
The truth is there has been little research on Cannabis and Parkinson’s. So, not much is actually known. However, one trusted medical professional shared with me that while it is very likely CBD oil will make me drowsy, it is less likely to support and promote a regular sleep cycle.
What the heck. I’ll give it a try.
Let the adventures into the world of Cannabis begin. Sweet dreams? I hope.
We asked our partners at PARKINSON CANADA for their official POSITION on cannabis…
“To-date, it has not been conclusively demonstrated by science based evaluation that marijuana can directly benefit people with Parkinson’s disease. There is a need for larger, controlled studies to better understand the efficacy of medical use of marijuana for Parkinson’s. If you are considering medical use of marijuana for Parkinson’s, we recommend you consult with your health care professional to carefully weigh potential risks and/or benefits for your individual situation. We will continue to monitor the topic of marijuana for medical purposes and will update our resources as new information becomes available.”
Parkinson Canada offers this resource for people with Parkinson’s who have sleep issues http://www.parkinson.ca/wp-content/uploads/Parkinsons-disease-and-Sleep-issues.pdf
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 my wife Rebecca Gifford and our son Henry.
Thank you to the founder of National Institute for Cannabis Health and Education, Barinder Rasode. Follow her on twitter @BarinderRasode. For more information on NICHE Canada try: https://www.nichecanada.com/ and here is a link to the Parkinson’s Foundation Center of Excellence research on Parkinson’s and Marijuana http://parkinson.org/Understanding-Parkinsons/Treatment/Medical-Marijuana
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | A check-up with my doctor and a check-in with my siblings | 17 Oct 2018 | 00:22:46 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
Every six months I go to the neurologist. Each time, he runs me through the same battery of tests. You can see him put me through these tests in this video https://globalnews.ca/video/rd/1320906819867/?jwsource=cl. I just saw him again, did those same tests, and my symptoms appear to progressing. It’s not the news anyone wants to get. It’s not the news we expected to get. I even challenged my neurologist. I said, “Uhh, I thought this disease was slow moving. This doesn’t seem slow moving.” He agreed. Once again, he’s increased my levodopa-carbidopa dosage. While I had his attention, I brought up the fact that I’m having a terrible time staying asleep. I’ve tried nearly everything it seems from meditation, light therapy and aroma therapy to Magnesium Glycinate and Melatonin. There are two more options on the table now. In this Extra Dosage, I discuss my options with co-host Nike Reitmayer and it results on our embarking on a journey.
After my neurology appointment, I texted my brothers Bruce and Dan and my sister Tracy to update them on the Parkinson’s. I really do not relish delivering bad news. I know they are holding out hope and praying hard for my health to improve. Hearing me explain about progressing symptoms and increases in medication every six months must be difficult to digest. We grew up in a home where humour was used to defuse tension. So, in my texts I often use self-deprecation and Parkinson’s jokes to lighten the mood. Those moments of levity are often greeted with a heavy silence. Not even a hapless emoji in response. I can almost hear them moan across the international border. So, I confront them about it. What about this disease makes it so difficult to joke and laugh like we used to when we confronted life and death issues with relatives growing up? What I learned is that my perception is not necessarily reality.
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 my wife Rebecca Gifford and my siblings Bruce Gifford, Dan Gifford and Tracy Cherry.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Disease Guy, getting recast in your life story, and other things you can't put on your LinkedIn | 3 | 10 Oct 2018 | 00:39:02 | |
I wish I didn’t have Parkinson’s. You wish I didn’t have Parkinson’s. In fact, as far as I can discern no one is really happy about it.
My Parkinson’s is inconvenient and uncomfortable for everyone involved. That uncomfortableness has led me to apologize for having it. I have moments nearly everyday when I try to make people feel better about my diagnosis and symptoms. (Frankly, I always thought it was supposed to be the other way around.)
But, I suppose I shouldn’t be surprised. We all play roles in each other’s lives. We’re cast. I’m the baby brother, the college buddy, ‘Smokey the sports radio guy’ and more. For each person in my life, I played a particular part. The inconvenience and uncomfortableness arises from the reality that no one cast me as ‘disease guy.’ It can be really awkward and depressing to face realities of disease — for everyone.
In August 2017, Parkinson’s hijacked my storyline and recast me in your life story and mine. Now, in addition to high school theatre geek, loving husband and wine lover, I’m Larry with a degenerative brain disease. Unfortunately, I don’t think that’s a skill set I can to add to my LinkedIn profile.
Yes, I wish I didn’t have Parkinson’s. I am, however, grateful that my story continues to be written.
Parkinson’s has given me an opportunity to update my character and made me realize that as people change, our narratives about them need to be rewritten too. In a rather healthy way, disease actually jumpstarts that process and forces people to see others in a new and different light.
In this episode of “When Life Gives You Parkinson’s”, my Mom, my wife Rebecca, my co-host Niki and I examine the roles we’ve accepted in each other’s lives, how we feel about those roles changing and what we can do to keep moving forward in life.
Follow Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Thank you Courtney Doherty, registered clinical Counselor at Parkinson’s Society.
Thank you as always to my wife Rebecca Gifford and my mom Marty Gifford
Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/
Follow them on Twitter
Brian Stever @SteverBrian
Taylor MacGillvary @Taymacgillivary
Jeremie Saunders @JeremieSaunders
10 steps to help you cope with a Parkinson’s diagnosis https://www.parkinson.ca/wp-content/uploads/10_Steps_eng_PC.pdf
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage | Love and Strength Through Adversity | 03 Oct 2018 | 00:15:28 | |
I love my wife. Rebecca and I just celebrated out 19th wedding anniversary. Last year, we were both thrown for a 20-yard loss when I was diagnosed with Parkinson’s disease. But a year later, we’re marching forward and trying to make the most of each moment of every day.
Rebecca keeps me positive, motivated, grounded and focused on the present moment. She’s full of strength, love and wisdom. What I wasn’t as conscious of was how much the disease has already changed the way I am around the home. In this episode, Rebecca talks to Global News reporter Neetu Garcha about how she is dealing with the diagnosis, how it’s impacted our everyday life and how she and my son have had to adapt and adjust their expectations of what I can do.
“I am in awe of him as much as he’s thriving,” said Rebecca. “But, I also see the challenges. Maybe I see it more than anybody else. And that’s heartbreaking, at times, to watch the disappointment and the frustration when there is something new that crops up.”
Warning: This interview triggered tears for me and it might for you.
Rebecca shared with Neetu, “It’s deepened my love for him to see how he’s managing all of this and still finding so much to take from it, to offer to us and to offer to the community.”
Parkinson’s can shake up life and relationships, but as with all adversity, it can also strengthen bonds of love and bring more meaning and purpose to each day of living.
The interview Rebecca was recorded while filming a three-part series about Parkinson’s for Global News.
Part One: ‘I’m arriving with each step:’ B.C. man creates podcast on learning to live with Parkinson’s
Part Two: Game-changing UBC research into Parkinson’s Disease
Part Three: One Parkinson’s patient to another: ways to cope with the condition
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
Special thanks to Rebecca Gifford and Neetu Garcha (@neetugarcha)
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Promise of Lithium as a Parkinson’s Disease Modifying Treatment | 01 Feb 2023 | 00:50:20 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Sharing the news, saying I love you, and "The Larry Filter" | 2 | 26 Sep 2018 | 00:40:24 | |
On April 4, 2017 I texted my brothers and sister. It read, “Hi all... news of a sort from up north. For some time now, I've been experiencing issues on the side of my body leading to foot dragging/clomping, favouring my left hand over right for many tasks, slurred speech at times... life threatening issues have been eliminated. Today I went to the MS clinic for tests. MS is very unlikely, but it appears I have something in the Parkinson's family. I've been referred to a specialist, will be getting a brain MRI and will be taking drugs to increase dopamine which should relieve my symptoms. I would encourage you not to worry, it seems under control and we aren't exactly sure what it is yet. But I wanted to make sure you were all in the loop. Love, Larry”
That text provoked many emotions from my siblings: shock, sadness, devastation, confusion, anger, and guilt.
In this episode, you’ll hear the most intimate conversations I have ever had with my two brothers and sister. I talk to Bruce, Dan and Tracy about that text, my Parkinson’s, our fears, and unconditional love. I also learn what the “Larry filter” is and I answer their questions about living with Parkinson’s.
When you get Parkinson’s disease it makes you reevaluate your relationships, how you live your life, your priorities, everything. These conversations are part of that process for me. What I discovered is that while it is my diagnosis, Parkinson’s is given to everybody in your life. It impacts each person in some way.
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 Bruce Gifford, Dan Gifford, Tracy Cherry and Rebecca Gifford for being an important part of my life and this story.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Parkinson Canada – Podcast Partner
Dila Valazquez – Story Producer
Rob Johnston – Audio Producer and Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Extra Dosage - What’s Up Doc? Larry talks to his Neurologist | 19 Sep 2018 | 00:19:55 | |
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.
From the time my hand started to tremor to the time of my Parkinson’s diagnosis I’d seen my family physician three times, been poked, pushed, pulled and tested by two neurologists and some residents, had blood tests, an ultra sound, an MRI, lost many hours in doctor office waiting rooms and chewed my fingernails to the quick – a couple of times. It was eight months of not knowing. And I was lucky. Some people are waiting years.
It is not as if putting a label on my strange symptoms made it better or even go away, but for me it is just a relief to know it is something. But why is Parkinson’s disease so hard to diagnose?
In this Extra Dosage episode of When Life Gives You Parkinson’s, I talk to my neurologist and pepper him with questions that I’ve never asked him before. Why is it hard to diagnose? What would he do if he was diagnosed? Is there really a gut health connection? What should I ask in my check-ups? What’s he looking for? And more. I find Dr. Jonathon Squires frank, funny, authentic, and accessible. I hope you do to.
Meanwhile, Niki sits down with a Sandie Jones and Grace Ferrari at Parkinson Canada. Sandy pre-dates the Parkinson wonder drug levodopa. She shares her experience with Parkinson’s as a nurse in the early 1960’s. After hearing what it was like, I’ll likely never complain about having to take my pills so often.
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
I see Dr. Jonathon Squires at the Djavad Mowafaghian Centre for Brain Health at UBC. You can find more information about the centre here https://www.centreforbrainhealth.ca/
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez - Story Producer
Rob Johnston - Senior Audio Producer
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Diagnosis: constant companion & frenemy | 1 | 12 Sep 2018 | 00:33:19 | |
My name is Larry Gifford. I am 46 and navigating life with a degenerative brain disease, which has no cure. I was diagnosed with Parkinson’s disease in August 2017 after years of collecting what I thought were disconnected symptoms. I shuffled when I walked, I lost my sense of smell, and eventually it was tremors that scared me enough to seek help.
On this week’s episode, my co-host Niki Reitmayer, and I explore my diagnosis, the symptoms, the drugs, and the emotions. I take you into my home to find out how my wife Rebecca and 9-year old son Henry are dealing with it, get inspiration and perspective from Nashville singer-songwriter Emily Chambers whose Dad has Parkinson’s and refreshing frankness from my appearance on the Sickboy Podcast. A Parkinson’s diagnosis is tough in many aspects; it’s clinically difficult for neurologists, it is personally difficult for friends and family, and it’s physically, emotionally and mentally taxing on the person with it – is it a frenemy for life?
Follow Larry Gifford – He has Parkinson’s
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow Co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Thank you to Caroline Wiggins Alicia Wrobel for your help
Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/
Follow them on Twitter
Brian Stever @SteverBrian
Taylor MacGillvary @Taymacgillivary
Jeremie Saunders @JeremieSaunders
Lastly, thank you to Emily Chambers https://www.emilychambers.ca/
Follow her on Twitter at @em_chambers
Credits
Parkinson Canada – Partner
Dila Valazquez – Story Producer
Rob Johnston – Audio Producer and Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Welcome | 29 Jun 2018 | 00:05:44 | |
I'm Larry Gifford, I have Parkinson's disease. I'm one of 10 million people diagnosed by a disease people know very little about, so, I will be sharing my personal journey into what it’s like to live and work with Parkinson’s disease as a 40-something husband and father with a career.
Podcast will be released in Sept. but please subscribe now so you don't miss a single episode.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Muhammad Ali’s Parkinson’s Journey w/ May May Ali and Michael S. Okun, MD | 31 Jan 2023 | 00:37:18 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| I Don’t Care Just Call It Apathy | 23 Nov 2022 | 00:49:55 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Live Inspired with John O'Leary | 02 Nov 2022 | 00:55:56 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Being Well with Parkinson’s | 19 Oct 2022 | 00:46:52 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| What’s Your Superpower? Feat. Geoff Constable | 12 Oct 2022 | 00:50:26 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| What’s New and Now in Parkinson’s | 22 Sep 2022 | 00:38:05 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| A 3-minute test for a Parkinson’s diagnosis | 07 Sep 2022 | 00:30:11 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| DBS: I Helped Surgeons Operate on my Brain | 22 Nov 2023 | 00:39:03 | |
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: ParkinsonsPod@curiouscast.ca
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| I Was Clueless About Caregiving | 24 Aug 2022 | 00:31:32 | |
Dave Iverson was diagnosed with Parkinson’s in 2004. He is a founding member of The Michael J Fox Foundation (MJFF) Patient Council and was the first host of the MJFF Parkinson’s Podcast. We caught up at a patient council meeting in New York City to chat about his new book “Winter Stars.”
Parkinson’s runs deep in Dave’s family, but this book is not strictly about Parkinson’s. It’s about family, life choices and a bone between a mother and son.
At the age of 59, having spent nearly forty years in public broadcasting, Dave paused his career. His 95-year old mother had a rough bout with pneumonia and couldn’t care for herself anymore. So, he paused his career, moved in with her and became her caregiving.
That decision resulted in a decade of self-discovery, an odyssey that forced Dave to come face to face with his personal weaknesses and uncharacteristic anger, while strengthening the bond to his mother and learning to live with, learn from and love dementia.
Winter Stars by Dave Iverson is available wherever you buy your books.
EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
“Winter Stars” by Dave Iverson – Sample Chapters, Listen to an Excerpt, Read Reviews, and Purchase
My Father, My Brother and Me – Watch Dave Iverson’s FRONTLINE documentary online.
Capturing Grace – Homepage for Dave Iverson’s film about Parkinson’s and Dance.
Care Partner Resources
PARKINSON CANADA
Care Partnering Home Page – Access the free care partner book, self-assessment guide, care partner burden calculator, home safety evaluation, activities of daily living, daily needs and routine tracker, Parkinson’s disease daily diary, and a “What-if” planning tool.
MICHAEL J FOX FOUNDATION
Care Partner Guide – “You, Your Loved One and Parkinson’s Disease” FREE DOWNLOAD from The Michael J Fox Foundation
Caregiving and Parkinson’s “Ask the MD” – The Michael J Fox Foundation’s Dr. Rachel Dolhun offers insight and advice to Care Partners in this four-minute video.
PARKINSON’S FOUNDATION
Care Partner Resources – Early in the Journey to Advanced Parkinson’s, getting outside help, Hotlines, government agency contacts, medication and financial assistance, and end of life planning.
AMERICAN PARKINSON’S DISEASE ASSOCIATION (APDA)
Care Partner Resources
PARKINSON’S UK
Care Partner Resources
European Parkinson’s Disease Association (EPDA)
Caring and Parkinson’s Resource Page
WRITING WORKSHOP
Tightrope Theatre - Rebecca Gifford’s online virtual writing workshop “Express Yourself” is open to everyone from anywhere. The six-week course begins in September 2022 and is open for registration through Tightrope Theatre.
Thanks to
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Two women with Parkinson’s, 200 years apart | 10 Aug 2022 | 00:38:55 | |
SUMMARY: In the book, “Mary & Me,” author Robyn Cotton draws upon her own experiences with Parkinson’s in a fictional novel based in contemporary times and early 1800’s London, England when Dr. James Parkinson was roaming the streets and noticing a condition, he called shaky palsy. Not often does Parkinson’s play such a key role in a fictional piece of work, Robyn’s journey grounds the book in near-real experiences as she and her characters struggle with the degenerative brain disease.
EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca
Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS
“Mary & Me” by Robyn Cotton – Buy it on Amazon
The BC Brain Wellness Program
Tightrope Theatre – “Playing with Words” workshops and the more intense “Express Yourself” six-week course with Rebecca Gifford are open for registration.
Thanks to
Dila Velazquez – Story Producer
Our Promotional Partners include:
Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.
Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Spinning Wheels | 20 Jul 2022 | 00:47:55 | |
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 for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to the following people and organizations featured in this episode:
Jim Redmond - LISTEN to Jim’s episodes from Season One
Parkinson’s Doesn’t Have to Be a Career Killer.
Hope, Fear, Frustration and Levadopa
Steve Iseman
Mike Loghrin
Darlene Richards-Loghrin
WANDA (The RV)
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.
Here is a link to Parkinson Canada’s “Together: No Matter What” campaign
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
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.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.
Credits
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Down Under | A Spark, A Warrior, and World Parkinson's Day | 08 Apr 2022 | 00:31:37 | |
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 participate, we’ll tell you how.
The featured guest is Founder of PD Warrior and the Insight into Parkinson’s virtual conference Melissa McConaghy, FACP. Melissa takes us behind the curtains of PD Warrior and gets us ready for Insight into Parkinson’s Conference.
We discuss stigma, self care, and neuro plasticity.
Thank you for listening.
EMAIL US: ParkinsonsPod@CuriousCast.ca
Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
KEY LINKS FOR THIS EPISODE
Documentary: The Long Road to Hope | Ending Parkinson’s Disease
The Spark www.WorldParkinsonsDay.com
PD Warrior www.PDWarrior.com
Insight into Parkinson’s www.PDWarrior.com/insight-into-PD
Unity Walk – www.unitywalk.com
Mediflix – www.mediflix.com
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Talk | Larry & Rebecca in Conversation – Part Three of Three | 16 Feb 2022 | 00:34:20 | |
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 partners.
This episode is dedicated to our dog Nina. We mention her a couple times in here. After this recording, her health turned and she’s no longer of this earth, but is someone where she can run free, where bully sticks are unlimited and she is free of pain.
Thank you for listening.
EMAIL US: ParkinsonsPod@CuriousCast.ca
Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. 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. The latest podcast, released on February 16th, 2022 features Larry & Rebecca and Kat & Ken Hill about intimacy and Parkinson’s. Happy Valentine’s Day.
PD Avengers – We are building a global alliance to end Parkinson’s. Sign up today and check out the events calendar at www.PDAvengers.com
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for July 2023… It’ll be here before you know it.
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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Talk | Larry & Rebecca in Conversation – Part Two of Three. | 02 Feb 2022 | 00:33:20 | |
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: ParkinsonsPod@CuriousCast.ca
Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. 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. Also noted in the 34 page booklet was…
PD Avengers – We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us. Details under “meetings” at PD Avengers dot com.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for t he 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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Talk | Larry & Rebecca in Conversation – Part One of Three. | 19 Jan 2022 | 00:29:19 | |
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, the joys and pressures.
Also, what we are discovering about what we need as people and a family to maintain balance and productivity in our relatively new life where Parkinson’s is a main character.
We are figuring out how to take true breaks, a concept and practice that changes its meaning constantly and looks different as Parkinson’s progresses. And we’re relearning how energy conservation and awareness affects our wellbeing and ability to be present and as healthy as possible.
Thank you for listening.
EMAIL US: ParkinsonsPod@CuriousCast.ca
Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. 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
This episode is dedicated in memory of my friend and fellow improve performer Sukhi. Thanks for the laughs pal. Godspeed.
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. Also noted in the 34 page booklet was…
PD Avengers – We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us. Details under “meetings” at PD Avengers dot com.
World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for t he 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.
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| Deep Dive into DBS | Part Two of Two: Shake it Off | 22 Dec 2021 | 00:49:11 | |
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 Avengers and members of Con P de Parkinson, a growing group of women who speak Spanish and have PD.
In part-one of this two-part arc, Heather Kennedy and Becca Miller were preparing for DBS Surgery. In part two, both women share their surgery experience. The share how their children responded and how they feel about DBS, now that they have had it.
Thank you for listening.
Send us songs you would want to listen to while undergoing DBS.
EMAIL US: ParkinsonsPod@CuriousCast.ca
Or add the songs you’d want to listen to during DBS to the WLGYP DBS PLAYLIST on Spotify
Have questions for Larry & Rebecca? Do you want to share your DBS story or have an idea for an upcoming podcast? Want to share how the podcast has helped you? Click the link on your laptop or desktop and leave us a voice message. https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to the following people and organizations featured in this episode:
Alfonso Fasano, MD, PhD, Chair in Neuromodulation and Multi-Disciplinary Care, Neurologist, Co-Director of the Surgical Program, Movement Disorders Centre, Toronto Western Hospital.
Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo
Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University.
Michael S. Okun, MD University of Florida
Kelly D. Foote, MD University of Florida
Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012)
Sonia Soriano-Espert, PwP, Valencia, Spain. Con P de Parkinson
Sabela Avion, PwP, NYC & Spain. Founder of Parkinsonic. Con P de Parkinson
Special music acknowledgements. Thank you to Justin Timberlake. We played 12 seconds of “Cant Stop The Feeling!” Credit goes to the song writers Timberlake, Max Martin, and Johan Schuster. Timberlake and Martin are also credited as producers along with Shellback.
Thank you to Taylor Swift. We played :17 of “Shake it Off.” The song was written by Swift, Max Martin and Shellback. It was released on Big Machine records in 2014.
A special thanks to Dorothy and Scarecrow. “If I Only Had a Brain,” is heard for 31 seconds. The song is featured in the 1938 film The Wizard of Oz. It is written by Harold Arlen and Yip Harburg. Ray Bolger and Judy Garland sang it when their characters first met along the yellow brick road. The film is still under copyright by Warner Pictures.
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.
Here is a link to Parkinson Canada’s “Together: No Matter What” campaign
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
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.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.
Credits
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The DBS Journey | Part One of Two: Your Brain Controls Everything and We Can Control Your Brain | 08 Dec 2021 | 00:40:44 | |
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 hesitations surrounding DBS. And we revisit friends of the podcast, Heather Kennedy and Becca Miller, both of whom are recovering from recent DBS surgeries.
Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to the following people and organizations featured in this episode:
Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo
Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University.
Michael S. Okun, MD University of Florida
Kelly D. Foote, MD University of Florida
Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012)
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.
Here is a link to Parkinson Canada’s “Together: No Matter What” campaign
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
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.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.
Credits
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| The Brain Under Siege | 24 Nov 2021 | 00:42:23 | |
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, another person dies from Parkinson’s disease.
What’s happening to us?
The Brain is Under Siege. In the kickoff episode of Season 4, Howard Weiner MD, a Harvard professor and Co-Director of the Ann Romney Center at Brigham and Women’s hospital shares his theories. Weiner released a book in October 2021 called, “The Brain Under Siege; Solving the Mystery of Brain Disease, and How Scientists are Following the Clues to a Cure.” He suggests the key to solving this diseases is to treat them like crime scenes. Learn along with Larry as Dr. Weiner details Alpha Synuclean, Microbiome, the Brain Gut Connection, and the importance of volunteering for research. He also explains how many of these brain issues have more in common that we first thought.
Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to the following people and organizations featured in this episode:
Dr. Howard Weiner, Harvard professor, Co-Director of The Ann Romney Center at Brigham and Women’s Hospital and author of “The Brain Under Siege.”
Dr. Ray Dorsey, co-author “Ending Parkinson’s Disease.”
Dr. Gregory Petsko – Ted Talk
Dr. Silke Cresswell – Studies role of Gut Biome
Ted Talks
Djavad Mowafaghian Centre for Brain Health
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.
Here is a link to Parkinson Canada’s “Together: No Matter What” campaign
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
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.
PD Avengers – We are building a global alliance to end Parkinson’s. Join us.
World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.
Credits
Dila Velazquez – Story Producer
Greg Schott – Sound Design
Learn more about your ad choices. Visit megaphone.fm/adchoices | |||
| DBS Pre-Op Talks: Love and Transition | 18 Oct 2023 | 00:31:20 | |
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: ParkinsonsPod@curiouscast.ca
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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| DELAYED: This pod and the WPC | 16 Jun 2021 | 00:05:51 | |
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 episodes drop, Rebecca and I will be on a hiatus from the podcast until sometime in 2022.
Breaking News. Big Announcement dropped on June 15 that the World Parkinson Congress 2022 in Barcelona is postponed one year to July 4-7. It will still be in Barcelona.
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| NBA star Brian Grant on hard work, team work, and Parkinson’s | 26 May 2021 | 00:53:04 | |
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 admits, YOPD is a different beast than pro basketball, “You can do that at Parkinson's, but it's just going to sit there and say, keep gritting your teeth and when you get done gritting your teeth… I'm going to have your cheekbone.”
From denial and depression to acupuncture and advocacy, Brian Grant’s PD story is a unique but relatable journey for many suffering and living with the disease. His honesty and vulnerability are on display as he, like many of us, try to come to terms with a disease determined to do whatever it pleases, whenever it wants to.
You can find out more about the Brian Grant Foundation at BrianGrant.org. His book Rebound: Soaring in the NBA, Battling Parkinson’s, and Finding What Really Matters is available everywhere you buy books…
Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons
Follow us, Larry & Rebecca Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to the following people featured in this episode:
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.
Here is a link to Parkinson Canada’s “Together: No Matter What” campaign
Thanks also to our content and promotional partners
The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford
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.
PD Avengers - United to end Parkinson’s. Join us.
World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.
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