Living With Parkinson's Meetup: May 2024 – DBS, Pain, and Navigating Uncertainty
Published 2024-06-06
In this month’s meetup, the panelists—including new panelist Larry Linton—discuss lessons they’ve learned while living with Parkinson’s and lessons they’re still working on. Topics discussed include DBS, distinguishing between pain related to Parkinson's from pain not related to Parkinson's and non-Parkinson's related pain, sleep and more.
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0:00 - Introduction and what have I learned about Parkinson’s?
9:56 - Adjusting expectations
17:23 - What helps me feel grounded
21:15 - Working with limitations
28:29 - How did you find a therapist?
34:12 - Surgery and DBS
42:39 - Sleep disturbances
54:44 - Self advocacy and conclusion
All Comments (14)
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Great conversation guys - you all covered a lot of ground. Thank you. Go Larry!
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You are all inspirational! Thank you for sharing! Lots of good ideas! 😀
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"I can't afford to get pissed off" about politics. Exactly. I can't afford to get pissed off at anything.
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I do PVP Speak Out exercises every day ! Great that you mentioned them 🎉
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Hi y'all. I'm slow going today, listening while I made alfredo. I did okay with the Romano, but have lightly parmesan'd half the kitchen floor. Was just really getting into shaking the giant parmesan container, pounding the sides and everything like it was a percussion instrument thinking I'll get it all out of my system breaking this up. The lid was apparently not totally snapped down. Was thinking "what's raining onto my toes?" Oh! face palm emoji Yesterday my brain and body were so overwhelmed but I got some stuff tended to before an all too often deadline. This cheese incident happened thankfully after I had let Pest Patrol in earlier today. I usually leave a note not sure I can get up and also be dressed, but he was so slow and patient circling around, today and I have had so many conversations through the door with him, not wanting him to think it's, him, that I pulled on a gown and long tee shirt over it, and managed to open the door and ask if it was still him as I heard him coming downstairs and I pulled off the note and let him in. I think it helped, even though I don't really have an indoor bug situation, to let him see sort of what's behind the curtain, and know I'm not just dissing him, when I ask in the notes to just spray the threshold if I don't manage to make it to the door. We recognize each other vocally. I think from riding fixed bus routes for several years. He usually has a drill sergeant call, but not so loud lately. Could tell was just real curious today.
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Can you talk more about pain and how you handle it. I get such bad pain inmynexk and shoulders that I have to lid down until it recedes makes me lethargic.
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Dealing with a sense of loss. Lack of motivation is frustrating. I finished 18 Ironman and trained almost every day. Struggle to find motivation.
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Hi my name is victoria Antrillo I have parkinson's.I got diagnosed about a Two years ago When I got dinosaurs , I was fifty to fifty two years old. So this is practically bad news for me. Was nice to hear all of your guys. Opinion on it I think you it helps can't wait to listen to some More.
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Do you have less pain on DBS?
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A good book for learning how to regulateyournnervoussystem is Unshakeable by Joann Rosen
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this is late... but apathy was not really addressed. And not all of us, incl early onset had great jibs, savings, live rich in opportunity. MY PD is isolating me to death.
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lol what I have learned with Parkinson’s I had pd since 2000 I made so may mistakes it isn’t even funny
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Can you talk more about pain and how you handle it. I get such bad pain inmynexk and shoulders that I have to lid down until it recedes makes me lethargic.
