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Curiouscast

Larry Gifford has Parkinson’s disease, and he wants to talk about it. When Life Gives You Parkinson’s chronicles Larry’s journey following diagnosis at age 45, but he knows he’s only part of the story. The podcast gives voice to the fascinating people that make up the Parkinson’s community and beyond — his family, his fellow people with Parkinson’s, care partners, advocates, researchers and healthcare providers. Through these interviews, the podcast informs and inspires others to share their own stories revealing the challenges and growth offered by the Parkinson’s journey. Larry is a seasoned broadcaster and the podcast is co-hosted by then-radio personality Niki Reitmayer until 2020 when Larry’s wife Rebecca takes on the role. Special thank you to our partners. Presenting partner is Parkinson Canada, content and promotional partner Spotlight YOPD, and The Michael J. Fox Foundation for Parkinson’s Research Parkinson’s IQ + You, PD Avengers, World Parkinson Congress #WPC2023 in Barcelona, Spain.

When Life Gives You Parkinson's

In the PD Avengers Weekly Chat titled "3 Things to Make 2025 Great!", co-founders Larry Gifford, Soania Mathur, and Tim Hague discuss three key actions to enhance the well-being of individuals with Parkinson's disease in the coming year:

Engage in Regular Exercise: Tim emphasizes the importance of consistent physical activity, citing research that shows 30 minutes of intense exercise, five days a week, can slow the progression of Parkinson's. He shares his personal routine at U-Turn Parkinson's, which includes activities like Tai Chi, dance, and functional fitness classes.

Build a Supportive Community: Larry highlights the value of connecting with others to combat isolation. Engaging with people facing similar challenges can significantly improve one's quality of life. He notes that having a reliable support network, like his co-founders, has been beneficial for him.

Participate in Research Initiatives: Soania encourages involvement in research, stressing that patient participation is crucial for developing better treatments and finding a cure. Opportunities range from enrolling in clinical studies to fundraising or completing online questionnaires. She mentions the Fox Insight study as an example of a valuable research project that involves filling out information online.

Additionally, they discuss the World Parkinson Congress's year-long fundraiser aimed at raising $25,000 for Young Onset Parkinson's travel grants for the upcoming congress in Phoenix in May 2026. They also congratulate Michael J. Fox on receiving the Presidential Medal of Freedom and acknowledge his continued advocacy for ending Parkinson's disease.
For more information about the PD Avengers and their initiatives, you can visit their official website: PD Avengers
To learn more about the World Parkinson Congress and their fundraising efforts, visit: www.wpc2026.org
For more information about the Fox Insight study, visit: www.foxinsight.com 
Learn more about your ad choices. Visit megaphone.fm/adchoices

PD Avengers: Three things to focus on in the new year

PD Avengers co-founders Larry Gifford, Soania Mathur, and Tim Hague Sr. discussed various topics related to Parkinson's disease, including recent news and advancements in Deep Brain Stimulation therapy. They also shared personal experiences and lessons learned since being diagnosed with Parkinson's, emphasizing the importance of self-advocacy, mindfulness, and finding positivity in the face of adversity. The conversation ended with a focus on what they've learned about themselves since their diagnosis.

Ask a question: www.speakpipe.com/pdavengers

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PD Avengers: What have you learned about yourself since your diagnosis?

The PD Avengers discuss the challenges of balancing life with Parkinson's disease, emphasizing the impact of Deep Brain Stimulation (DBS) on daily routines. Both Tim Hague and Larry Gifford highlighted the necessity of daily naps and improved sleep post-DBS, though daytime sleepiness persisted. They shared personal strategies like improv for maintaining positivity and energy. Traveling with DBS was noted as challenging, with issues like being patted down at airports. They promoted the PD Avengers community, encouraging sign-ups to amplify their voice in ending Parkinson's. The conversation also touched on practical tips like using the sunflower card for hidden disabilities at airports. www.pdavengers.com https://sparkthenight.org https://hdsunflower.com/

ASK A QUESTION: https:///www.speakpipe.com/pdavengers
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PD Avengers Weekly Chat - Balancing Life and PD

PD Avengers co-founders Soania Mathur and Larry Gifford discuss the challenges of REM Sleep Behavior Disorder (RBD), a condition often associated with Parkinson's disease. Larry shares his experience of waking his wife up multiple times due to vivid, disturbing dreams and physical movements during sleep. Despite not having hit anyone yet, he described grabbing things and pulling a lamp toward them, which causes objects to fall. He also mentions how his wife, who sleeps in another room, checks on them during these episodes for safety.
Soania relates to this experience, noting she developed RBD after their Parkinson’s diagnosis. She describes having vivid and violent dreams, often feeling anxious. She highlights the unpredictability of RBD, which disrupts her sleep and contributes to daytime fatigue. Both speakers express concern for their care partners, as they experience anxiety and stress from the disruption of their own sleep while trying to ensure safety.
The conversation touches on a survey that revealed the significant stress care partners experience due to sleep disturbances in people with Parkinson’s. The speakers acknowledge the importance of sleep for both the individual with Parkinson’s and their care partner, noting that a lack of sleep adds stress and affects overall well-being. They conclude by discussing the ongoing research and the continuous struggle that Parkinson’s disease presents. 
LINKS: SLEEP SURVEY https://www.pdavengers.com/sleepsurvey
PDAVENGERS: www.pdavengers.com
SPARK THE NIGHT: https://sparkthenight.org
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PD Avengers: REM Sleep Behavior Disorder (RBD)

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

Welcome

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

The Diagnosis: constant companion & frenemy | 1

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

Extra Dosage - What’s Up Doc? Larry talks to his Neurologist

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

Sharing the news, saying I love you, and "The Larry Filter" | 2

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

Extra Dosage | Love and Strength Through Adversity

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

Disease Guy, getting recast in your life story, and other things you can't put on your LinkedIn | 3

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

A 3-minute test for a Parkinson’s diagnosis

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