The Parkinson's Podcast Unfiltered: Perspectives on Pain
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- Опубликовано: 18 окт 2024
- To subscribe to our podcast and RUclips channel visit: / @davisphinneyfdn
In this episode of the Parkinson's Podcast Unfiltered, Kat and Heather discuss multiple ways pain and Parkinson's intersect. Listen in as Kat and Heather discuss dystonia, off times, the difficulty of determining whether pain is caused by Parkinson's or not, and more. Your hosts also have some tips and observations about how to manage pain--including some thoughts about complementary therapies, the importance of breathwork, and finding ways to remain level-headed no matter what challenge you may be facing.
For more information about the Davis Phinney Foundation visit: dpf.org
Season 5 Episode 21 (Unfiltered Episode 7)
Hello to All , the irony of subject of the pain. I got notification and I was struggling to see the message. You my friends are angels I was just coming out of this painful experience with muscle spasms and spinal lumber stenosis . I am still recovering from 5 levels back fusion surgery.
Exactly , when you’re in pain you are not feeling whole because all your focus is how and what else can I do to get rid off it .
I agree with you I found myself slowly and get more and more finding excuses because even I felt to go out to meet friends because I don’t want to go out and have the fear that I have one of the scary and painful episode . I don’t want to ruin people good time . I looks at pictures from different events and you can see how my face tell it all .
This can be so challenging. You might find this episode of the Living with Parkinson's Meetup helpful: ruclips.net/video/jc3zjFZPhTc/видео.html
In it, the panelists talk about ways to avoid social isolation when navigating some of the challenges of Parkinson's. It's not focused on pain, but you might find some ideas in the conversation interesting or useful.
@@davisphinneyfdn Thank you will watch again and take notes 🙏❤️
You ladies blessed having each other to support each other. It’s hard trying took some to your friend people. It’s what you’re going through how PD is uniques in itself because they say it goes when you see one Parkinson’s you seen one.Which is very true but for some reason, healthcare providers are conditioned to write meds as first line of treatment rather than focus on other natural remedies.. I strongly believe that that one Dr with you on the carpet of Loba and all these other medication with their side effect it’s hard to come back out of that you know so it’s I’m just getting mad. I’m just thing mess because the first neurologist diagnosed me, will not listen to me. Today , I am far fond from being able to be meds free 😢😢
You ladies are awesome. Pain is taken for granted by those don’t understand what we go thur with Parkinson pain
Thank you both for your support. We understand everyone's experience with Parkinson's is different and we aim to highlight as many unique perspectives as we can. It's also important to have a community around you to help navigate the ups and downs of treatment for Parkinson's.
As. Ram Das said, we’re all just walking each other home
Have curling toes that are very painful! It only happens on my left foot. I’ve had Botox shots every 3 months because of insurance. Also I was diagnosed with a tarsal coalition or missing a joint in my left ankle. I never know when it will happen I was diagnosed with missing joint at the age of 40. PD at the age of 75.
Have you watched this video? It may have some tips in it that could be helpful: ruclips.net/video/7bICeA9Rn7o/видео.html
We talking about how some doctors don’t hear what the patients telling them .
I am the epitome of been diagnosed at the age of 47 with no family history either genetic study. I had done with NIH referred to the Parkinson clinic because of the presentation in the abnormality and by the way, this is like the fifth doctor so because my movement sent me to her colleagues who is work in the Busson clinic at NIH because basically they just bouncing me like a football from ❤️doctor to another because they don’t wanna deal with what I’m telling them what all I am dealing with and meds I was given didn’t help in fact worsen my pain and tremors etc . They kept saying no no no no this is not a Parkinson no no no this is not from Parkinson or maybe just orthopedics if you legs did that right after the very first time I took siement but falls on deaf ears, egos because I am not a textbook patient with the Parkinson’s I often wondering if I even have it
Thanks for your comment. We're sorry to hear that you have had this experience. Parkinson's symptoms can overlap with so many other conditions that it can be a challenge to find clarity about best ways to treat symptoms. Have you had any diagnostic tests like SYN-One, a DaTscan, or SYNTap?
@@davisphinneyfdn only DaTascan confirmed the diagnosis not sure if I what the other two
Well I just wrote a veritable book, and Windows narrator lost focus when the browser timed out,
dropping all of it after I nearly had it all edited. That was about three hours, dancing with the worst editing software options in text to speech navigation ever. No wait. Talkback is worse, on an Android. I constantly question myself like Kat, and am also angry like Heather, about the people conditioning us to constantly question ourselves over and over, and not even acknowledging what all we have actually done for years trying to mitigate our situations and do what ever we can. There is no magic bon bon.
Oh no! Sorry to hear the technology failed.
But yes: it's important to acknowledge our successes: every victory counts!