The Parkinson's Podcast Unfiltered: Grief

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In this episode of the Parkinson’s Podcast Unfiltered, Heather and Kat discuss how they approach the sadness, loss, and grief while still finding joy and productive ways to live well today.
To subscribe to our podcast and TH-cam channel visit: / @davisphinneyfdn
For more information about the Davis Phinney Foundation visit: dpf.org
Season 5 Episode 13 (Unfiltered Episode 3)

[@elainemcconkie6518]

I sooo needed to hear this podcast! Thank you for your transparency and honesty! I have been alone in thinking about this topic a lot lately- since things have progressed to a scary stage. The neurological degeneration feels like a funeral every day. Only people that have a degenerative disease knows the claustrophobic feeling this leaves you with.
Keep up the good work ladies- giving a voice to what so many of us are feeling.❤️‍🩹

[@davisphinneyfdn]

Thanks for your comment. You're definitely right that many people with Parkinson's experience grieving throughout their time living with Parkinson's, and it can be hard to talk about or explain. We're happy to know this episode helped you.

[@kellytravis9806]

Exactly: You're not a number.
"Universal birth and mortality." Yes! Most don't have a constant reminder of mortality. Most don't actually experience death/grief without toxicity positivity moving everyone on "we all go at some time" and not taking the pause and time for grief. Let someone cry, mourn, sit in the silence of the amputation; trying to demand a cheer up is criminal. The amount of times people told me to smile or mind over matter when i was mourning induced rage in me, still does.
I would have benefit greatly from a death doula. I wandered for a real long time trying to figure out how do i continue on. Years later it's still something I deal with.
Great show. Good coverage of a big, important topic. Thank you H.K and K.H (Look! You mirror each other!)

[@davisphinneyfdn]

Thanks for your comment. Here is some more information about death doula's, for those viewers who might be interested in more information: inelda.org/about-doulas/what-is-a-doula/
We hear a lot about this sense of wandering from people with Parkinson's. Every person will experience grief and loss, and because of Parkinson's tendency to change over time, people with Parkinson's tend to face a sense of personal grief and loss more frequently than most. It's not the same as mourning the loss of a loved one--no two losses are entirely alike, of course--but many people with Parkinson's experience a sense of ongoing loss as their symptoms and what they can do changes.
We're here to help. Our education team can be reached at [e-mail] and our community engagement team can be reached at [e-mail].

[@terrineedham9862]

You are both so wonderful to listen too♥️♥️

[@kendrapatterson4629]

Thank you for sharing your experience strength and hope ❤

[@terrident4360]

Oh ladies it does indeed get harder and harder to pretend all is fine. Maybe now is the time to let everyone in. The incremental losses mount to be almost unbearable.

[@davisphinneyfdn]

Thanks for your comment and support. Being together helps!

[@Michael-he7xn]

You ladies are quite remarkable! It’s a good reminder that we’re all wrestling with these issues and we’re not alone. Your insights are really appreciated. I’ll listen to the podcast a second time on the way home.

[@davisphinneyfdn]

Thanks for your comment and encouragement. We're glad to help remind you you're not alone, and your feedback does the same for us!

[@Roadkill07]

Great podcast! Love the way you two covered this topic. Thank you for compelling content

[@davisphinneyfdn]

Thanks for listening and sharing some time with us!

[@ocrodger]

I find myself crying everyday several times a day because of this diagnosis of Parkinson's. Is this normal? I grief the loss in my body and what I used to be able to do. I don't know what to tell myself. I'm 68 years old and up until 3 years ago I was very active. Very active. Daily bike rides daily adventures out with my husband daily Joy. Now my Life is just filled with sadness. I have a therapist that tries to help. I find it very hard to accept my Parkinson's diagnosis. Any suggestions would be helpful. Thank you

[@davisphinneyfdn]

Thanks for your message. It is common for people to grieve following a Parkinson's diagnosis. You are not alone.
Have you joined us for any sessions of our Living with Parkinson's Meetup? You might find value in hearing the panelist's perspectives. Also, attending the live recording webinars is different than watching the recording because the audience chat tends to be vibrant. You can sign up to attend, here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
You might also consider reaching out to a Davis Phinney Foundation Ambassador: davisphinneyfoundation.org/ambassador-search/
Many people with Parkinson's continue to cycle. If you feel unable to use your old bike, have you considered a tandem bike or recumbent trike? These options may help you get out and kick your active life back into gear!