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Podcast: Treating Parkinson's 'Off' Episodes
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What I Wish I Had Known at Diagnosis

It’s undoubtedly one of life’s most challenging moments – when you or your loved one is diagnosed with Parkinson’s. For many, the first few days, months and even years can be a roller coaster of reactions and emotions. Fear and confusion can make it difficult to find perspective, and even more difficult to imagine the future. It often takes time to face life with the disease and discover how to thrive.  

In this episode, members of The Michael J. Fox Foundation’s Patient Council and their care partners share their honest reactions to their diagnosis — from panic and denial to sadness and loneliness. This group of men and women of different ages and backgrounds offers words of wisdom about what to consider, what they’ve lost and what they’ve gained – and you’ll be surprised to hear how, for some, including MJFF Patient Council member Wanda Kim Lilley, what they’ve gained is more than what they lost:  

"I feel much more grateful for my life now. I think that I took a lot of things for granted. Things came very easily, and now, I understand a bit more about what struggle is. And it's allowed me to connect with people at a deeper level and to have greater compassion for myself and others." 

If you’d rather listen on the go, subscribe to our Michael J. Fox Foundation Parkinson's Podcast on iTunes or through any podcast app on your smartphone or tablet. If you enjoyed what you heard, share it with a friend or leave a review on iTunes. It helps listeners like you find and support our mission.     

Larry and Rebecca Gifford host this episode and share their own diagnosis stories and advice as they weave in the diverse voices and unique perspectives of several members of MJFF's Patient Council.  

  • Larry is co-founder and president of the PD Avengers and a member of The Michael J. Fox Foundation’s Patient Council. He was diagnosed in 2017 at age 45.  

  • Rebecca is a writer, workshop facilitator, and a Parkinson’s and care partner advocate. Together, she and Larry co-host the podcast "When Life Gives You Parkinson’s.” 

  • The Michael J. Foundation Patient Council is made up of 39 people living with Parkinson’s: men and women, early-onset and diagnosed after 50, diagnosed just a few years ago and living with it for decades. As a group they have vast experience navigating life with Parkinson's.    

View a transcript of this podcast.

If you or a loved one was recently diagnosed and you’re wondering where to start, visit https://www.michaeljfox.org/newlydiagnosed to find helpful resources, including an educational guide, support groups and videos. 

Whether you are recently diagnosed or have been living with Parkinson’s for many years, The Michael J. Fox Foundation’s Parkinson’s Buddy Network is a free, online platform that helps you find new connections, access educational resources and engage in important dialogue. Join our community today.   

People recently diagnosed with Parkinson’s play a valuable role in research. The Foundation’s landmark study, the Parkinson’s Progression Markers Initiative, also known as PPMI, is recruiting people of all backgrounds that have been diagnosed in the past two years and have not started Parkinson’s medication yet. Call 877-525-PPMI or email joinppmi@michaeljfox.org  to get started today.  

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