Living With Parkinson's Meetup: May 2024 - DBS, Pain, and Navigating Uncertainty
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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.
Join us on the third Thursday of every month at 1 pm MDT by registering here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup
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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
@Michael-he7xn 25 күн бұрын
Great conversation guys - you all covered a lot of ground. Thank you. Go Larry!
@davisphinneyfdn 25 күн бұрын
Go Larry, indeed! We're glad to have him onboard the panel, and we're excited to follow along with his ride through Canada.
@MyPDDaily 25 күн бұрын
You are all inspirational! Thank you for sharing! Lots of good ideas! 😀
@davisphinneyfdn 25 күн бұрын
Thanks for your kind words and for following along on the panelist's journeys. We're glad you found good ideas in this episode!
@TheOnBoardLife 25 күн бұрын
"I can't afford to get pissed off" about politics. Exactly. I can't afford to get pissed off at anything.
@julieanna8495 14 күн бұрын
I feel the same way. We have so little of our dopamine receptors left, we need to only focus on what we can control.😐. Everyone else’s drama and world events no longer get to have my attention or emotions. This is a radical shift for me, but I am learning at 65 to become selfish’ with my emotions and worries. 💪🏼👏🏼
@splashesin8 24 күн бұрын
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.
@sharonmaplethorpe9168 22 күн бұрын
I do PVP Speak Out exercises every day ! Great that you mentioned them 🎉
@davisphinneyfdn 21 күн бұрын
Parkinson Voice Project is great! Find more information about their work here: parkinsonvoiceproject.org/
@antycoco 21 күн бұрын
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.
@davisphinneyfdn 21 күн бұрын
We'll add it to the list for our next meetup (on 6/20)!
@jrrosania486 26 күн бұрын
Dealing with a sense of loss. Lack of motivation is frustrating. I finished 18 Ironman and trained almost every day. Struggle to find motivation.
@davisphinneyfdn 25 күн бұрын
Motivation is such a challenge for so many people with Parkinson's. Some find that the simple act of putting things on the calendar can help--especially if they use a smart phone or smart watch calendar that can repeatedly remind them when it's time to do X, Y, or Z. Of course, this doesn't work for all and it's not even fail-safe for those for whom it does work. We have some blog post content coming about some tips and tricks to deal with apathy and loss of motivation that we've learned from folks in our community. In the coming weeks, that content will be posted here: davisphinneyfoundation.org/resources/#blog
@victoriaantrillo-xs2xi 21 күн бұрын
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.
@davisphinneyfdn 18 күн бұрын
Do you ever attend the meetups live? You can register to do so here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
@antycoco 21 күн бұрын
A good book for learning how to regulateyournnervoussystem is Unshakeable by Joann Rosen
@bernadettevaz2748 21 күн бұрын
I have noticed that when you engage in activites you enjoy and find pleasurablè and ❤spènd time with people who are kind and empatheric my movements and mood are great. I am a pianist singer online math teacher and athlete. I continue to do them and above all share it with youngsters. However i dont run but i exercise. I'm happiest when i can help my family and others. Thank you so much for sharing yr experiences wirh us. Bernadette Vaz..india
@antycoco 21 күн бұрын
Do you have less pain on DBS?
@davisphinneyfdn 20 күн бұрын
We aren't sure of the impact of DBS on pain for the panelists, but this may come up in our next session, where we plan to talk about non-motor symptoms. If you're not already signed up to join davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/ Also, research studies have generally found some improvement in pain levels following DBS, but there are some nuances to the results. Here is an example, which discusses some aspects of programming relative to pain reduction and observes that the effect on pain may be delayed: www.ncbi.nlm.nih.gov/pmc/articles/PMC8281028/
@plumjess 19 күн бұрын
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.
@davisphinneyfdn 19 күн бұрын
Thanks for your comment. Isolation and apathy are certainly big challenges for many people living with Parkinson's. Join the panelists live at this month's meetup on July 20th, when the topic will be non-motor symptoms. We'll touch on apathy. If you're not yet registered to attend, you can do so here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/ We also have some new blog-based content on apathy in particular coming soon. In the meantime, here's an archive of our content that touches on the apathy: davisphinneyfoundation.org/tag/apathy/
@SteveCordner-ne1pu 20 күн бұрын
lol what I have learned with Parkinson’s I had pd since 2000 I made so may mistakes it isn’t even funny
@antycoco 21 күн бұрын
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.
@davisphinneyfdn 21 күн бұрын
We'll add it to the list for our next meetup (on 6/20)!