Davis Phinney Foundation for Parkinson's
Davis Phinney Foundation for Parkinson's
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The Parkinson's You Don't See: Cognitive and Non-Motor Symptoms
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation.
In this episode, Dr. Joanne Hamilton of Advanced Neurobehavioral Health, delves into the non-motor and cognitive symptoms of Parkinson's and provides practical strategies for symptom management.
To subscribe to our podcast and UA-cam channel visit: www.youtube.com/@davisphinneyfdn/podcasts
For more information about the Davis Phinney Foundation visit: dpf.org
Season 5 Episode 16
Переглядів: 2 690

Відео

Living With Parkinson's Meetup: May 2024 - DBS, Pain, and Navigating Uncertainty
Переглядів 2,6 тис.21 годину тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/youtubedonation 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 ...
The Parkinson’s Podcast Unfiltered: Flipping the Script
Переглядів 930День тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation. Do you "have" Parkinson’s or do you "live with" Parkinson’s? Do you "fight" your diagnosis? If so, can you do something “wrong” and “lose the battle”? In this episode of the Parkinson’s Podcast Unfiltered, Heather and Kat discuss...
The Parkinson's Podcast: Drumming Beyond Parkinson's
Переглядів 66014 днів тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation. Explore David Putterman's journey from professional drummer to person living with Parkinson's and back to the stage, revealing how reconnecting with music supported by a music therapist improved his quality of life and helped all...
The Parkinson's Podcast Unfiltered: Grief
Переглядів 1 тис.21 день тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation. 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 UA-cam ...
Care Partner Meetup with Dr. Jori Fleisher - May 2024
Переглядів 68521 день тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/youtubedonation This month’s Care Partner Meetup features a question-and-answer session with Dr. Jori Fleisher, a movement disorder specialist who works at Rush University. Dr. Fleisher has a special interest in the impacts Parkinson’s has on care ...
Sex, Intimacy, and Parkinson’s
Переглядів 1,5 тис.28 днів тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/youtubedonation In this video, Devon Fulford, Davis Phinney Foundation Director of Education and Content, talks with Lisa Thomas and Daniel Fleshner, two certified sex therapists, about the ways Parkinson’s may affect sex and intimacy. To be notifi...
The Parkinson's Podcast: Louisiana Walks for the Davis Phinney Foundation
Переглядів 284Місяць тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation. In this episode, join us for an inspiring conversation with Michelle David Lane and Susan Sapir-Fields, the founders of Louisiana Walks (LA Walks) for Parkinson’s. Discover the heartwarming story behind this annual fundraiser ben...
The Parkinson’s Podcast Unfiltered: Sex
Переглядів 2,4 тис.Місяць тому
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodcastdonation. In this episode of the Parkinson’s Podcast Unfiltered, Heather Kennedy and Kat Hill dive deep into the importance and challenges of sexual health for people with Parkinson’s. Strap in for the ride: as always, with Heather and Kat...
The Parkinson's Podcast: Mobility Matters: NexStride and the Parkinson's Community
Переглядів 903Місяць тому
The Parkinson's Podcast: Mobility Matters: NexStride and the Parkinson's Community
Living With Parkinson's Meetup: April 2024 - Getting Things Done
Переглядів 4,4 тис.Місяць тому
Living With Parkinson's Meetup: April 2024 - Getting Things Done
Women and Parkinson’s Panel: Relationships
Переглядів 1,3 тис.Місяць тому
Women and Parkinson’s Panel: Relationships
The Parkinson's Podcast Unfiltered: Stigma
Переглядів 1,8 тис.Місяць тому
The Parkinson's Podcast Unfiltered: Stigma
2024: Emerging Therapies and Parkinson’s
Переглядів 19 тис.Місяць тому
2024: Emerging Therapies and Parkinson’s
The Parkinson's Podcast: Disability and Changes of Ability in Parkinson’s
Переглядів 1,4 тис.Місяць тому
The Parkinson's Podcast: Disability and Changes of Ability in Parkinson’s
Living With Parkinson's Meetup: March 2024 - Parkinson’s in the Media
Переглядів 3,1 тис.2 місяці тому
Living With Parkinson's Meetup: March 2024 - Parkinson’s in the Media
The Parkinson's Podcast: Advanced Parkinson's with Dr. Karunapuzha
Переглядів 1,3 тис.2 місяці тому
The Parkinson's Podcast: Advanced Parkinson's with Dr. Karunapuzha
Navigating Parkinson's: Women's Perspectives and Experiences
Переглядів 2,3 тис.2 місяці тому
Navigating Parkinson's: Women's Perspectives and Experiences
The Sparx3 Trial: Investigating Exercise and Neuroprotection
Переглядів 7602 місяці тому
The Sparx3 Trial: Investigating Exercise and Neuroprotection
The 2023 Tour de Victory and the Road Ahead
Переглядів 1922 місяці тому
The 2023 Tour de Victory and the Road Ahead
Join Team DPF at Copper Triangle and Support the Davis Phinney Foundation
Переглядів 1792 місяці тому
Join Team DPF at Copper Triangle and Support the Davis Phinney Foundation
Nutrition and Parkinson’s with Kristin Gustashaw, RD
Переглядів 2,9 тис.2 місяці тому
Nutrition and Parkinson’s with Kristin Gustashaw, RD
The Parkinson's Podcast: The SteadyScrib Story - A Pen for Parkinson's
Переглядів 6192 місяці тому
The Parkinson's Podcast: The SteadyScrib Story - A Pen for Parkinson's
Parkinson's Stigma and Medication Access in Africa: The Context for "Shaking Hands with the Devil"
Переглядів 5523 місяці тому
Parkinson's Stigma and Medication Access in Africa: The Context for "Shaking Hands with the Devil"
The Parkinson's Podcast: A Conversation about Clinical Trials
Переглядів 5403 місяці тому
The Parkinson's Podcast: A Conversation about Clinical Trials
Living With Parkinson's Meetup: February 2024 - Love and Relationships
Переглядів 2,9 тис.3 місяці тому
Living With Parkinson's Meetup: February 2024 - Love and Relationships
Navigating Insurance and the Healthcare System with Sarah Chen
Переглядів 6233 місяці тому
Navigating Insurance and the Healthcare System with Sarah Chen
A Special Episode with Davis Phinney and Kevin Kwok and the No Barriers Podcast
Переглядів 1 тис.3 місяці тому
A Special Episode with Davis Phinney and Kevin Kwok and the No Barriers Podcast
Care Partner Meetup with Dr. Mark Mapstone - February 2024
Переглядів 1,1 тис.3 місяці тому
Care Partner Meetup with Dr. Mark Mapstone - February 2024
Moments of Victory: The Wahooligan Tour
Переглядів 3664 місяці тому
Moments of Victory: The Wahooligan Tour

КОМЕНТАРІ

  • @OCloggs
    @OCloggs 14 годин тому

    What about female in 50s with urinary retention, no leaking but waking up 2-3 times at night, slow stream and bladder doesn't feel fully relieved, is this a Parkinson's symptom?

  • @splashesin8
    @splashesin8 19 годин тому

    Pretty much everything which largely eats up my time, besides just what all I need to get done. Whatever my body is doing interrupts me continuously. A larger problem to me seems to be a culturally developed set of unrealistic social expectations that are more and more off the rails every day, for just everyone whether they are chronically ill or not. The demands are more than 25 times as much in my estimation

  • @kaycampbell6833
    @kaycampbell6833 День тому

    Thank you so much for this -- and I will say, it's not just Parkinson's. I have MS and while I was diagnosed only five years ago, I have had symptoms for nearly thirty years (I'm 52) and almost all of them haven't been motor but cognitive and emotional and other non-motor physical symptoms. It took a motor symptom (a numb leg) after years of other issues and being told it was all in my head to finally get an MS diagnosis. And although I currently have excellent care and medical support from the best in the region, these top-end experts still don't really recognize anything beyond the motor symptoms. So thank you and please keep spreading the word.

  • @PapaPedro99
    @PapaPedro99 День тому

    Very well done! It's hard to find those words... I know.

  • @debbiegardiner7819
    @debbiegardiner7819 День тому

    I would love to get in touch with Doug Reid of Lafayette. I live in Heritage Todd Creek in Thornton, CO and am just starting a Support Group at the Clubhouse in the Community. I was recently diagnosed with Parkinsons and MS. Thank yo u! Debbie Gardiner

  • @splashesin8
    @splashesin8 День тому

    :)

  • @marycain5668
    @marycain5668 2 дні тому

    We don't know that it's a preventable disease. The invention of AI we should have all of these diseases already figured out by now! I have to say that it is unbelievably unethical for research companies to go on for decades without finding a solution.

    • @davisphinneyfdn
      @davisphinneyfdn 2 дні тому

      Thanks for sharing your thoughts. We hear you. It's difficult to overstate the frustration many feel about the fact that the most effective medication for most people with Parkinson's was developed more than 50 years ago. Still, we can attest to the diligence, care, and hard work of so many researchers and scientists who are working on Parkinson's. Parkinson's truly is extraordinarily complicated, and there are many basic facts about the brain that we just don't fully understand yet. Regarding your observation about AI, you might have heard about the discovery of how proteins fold back in 2022: www.scientificamerican.com/article/one-of-the-biggest-problems-in-biology-has-finally-been-solved/ Those findings are helping with further research specifically investigating Parkinson's: www.nature.com/articles/s41586-024-07487-w www.ccn.com/news/technology/google-deepmind-alphafold-3-drug-discovery-alzheimers/

  • @magmapoet9
    @magmapoet9 2 дні тому

    19 years post-diagnosis, this is still so helpful to hear. most of my symptoms are these type--not the usual obvious motor symptoms. this is a very good summary!! THANKS!

  • @edwinschwank2446
    @edwinschwank2446 3 дні тому

    My wife has been diagnosed with "parkinsonian" mild cognitive impairment, and after watching this video, I can identify with so many of these symptoms....and is pegging this disease, except the statement that she will NEVER forget who they are, but today, she could not give me her name. This is so confusing because so many of these symptoms fit.... I am determined to nail this disease down as much as possible. Maybe she just has some other form of dementia. Bewildered care giver.

    • @davisphinneyfdn
      @davisphinneyfdn 2 дні тому

      Thanks for your comment. Based on your description, you might consider asking your care team if there is a neuropsychologist they can refer you to in your area. Having an expert perspective might be helpful. It's never to early to check in with a specialist regarding cognitive issues. You might also find this video helpful: ua-cam.com/video/Sio0_3AHljQ/v-deo.html

    • @edwinschwank2446
      @edwinschwank2446 День тому

      @@davisphinneyfdn She has a neuropsychologist, who has identified my wife with "parkinsonian like" dementia. But my wife can even lose WHO she is, name etc. So why would this be happening if she has Parkinson's?? dr. says she can have combination of Park/Alzimers

  • @zekesuper
    @zekesuper 3 дні тому

    Thank you😊

  • @plumjess
    @plumjess 3 дні тому

    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
      @davisphinneyfdn 3 дні тому

      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/

  • @SuzanneJenkins-rc6ur
    @SuzanneJenkins-rc6ur 3 дні тому

    Falling

  • @SteveCordner-ne1pu
    @SteveCordner-ne1pu 3 дні тому

    lol what I have learned with Parkinson’s I had pd since 2000 I made so may mistakes it isn’t even funny

  • @user-hf9sp4jw8c
    @user-hf9sp4jw8c 3 дні тому

    ❤❤

  • @victoriaantrillo-xs2xi
    @victoriaantrillo-xs2xi 4 дні тому

    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
      @davisphinneyfdn 2 дні тому

      Do you ever attend the meetups live? You can register to do so here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

  • @antycoco
    @antycoco 5 днів тому

    Do you have less pain on DBS?

    • @davisphinneyfdn
      @davisphinneyfdn 4 дні тому

      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/

  • @antycoco
    @antycoco 5 днів тому

    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
      @davisphinneyfdn 5 днів тому

      We'll add it to the list for our next meetup (on 6/20)!

  • @antycoco
    @antycoco 5 днів тому

    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
      @davisphinneyfdn 5 днів тому

      We'll add it to the list for our next meetup (on 6/20)!

  • @antycoco
    @antycoco 5 днів тому

    A good book for learning how to regulateyournnervoussystem is Unshakeable by Joann Rosen

    • @bernadettevaz2748
      @bernadettevaz2748 5 днів тому

      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

  • @jeremykitchin3527
    @jeremykitchin3527 5 днів тому

    Stop\ 4:41

  • @sharonmaplethorpe9168
    @sharonmaplethorpe9168 5 днів тому

    I do PVP Speak Out exercises every day ! Great that you mentioned them 🎉

    • @davisphinneyfdn
      @davisphinneyfdn 5 днів тому

      Parkinson Voice Project is great! Find more information about their work here: parkinsonvoiceproject.org/

  • @user-xd3om6ln9j
    @user-xd3om6ln9j 7 днів тому

    My Dr has taking 2 watt My Dr. has me 2 water pills daily. Since I have been taking water pills My weight has gone from 100 pounds to 115.. Weight seems to higher. I can fit in 2 pairs of jeans.Thougths

    • @davisphinneyfdn
      @davisphinneyfdn 2 дні тому

      Thanks for your comment. It's not unheard of for water pills to result in weight gain: www.womenshealthmag.com/weight-loss/a19915077/6-things-you-didnt-know-about-water-pills/ Moreover, some weight gain is not necessarily to be avoided for people with Parkinson's. The reason isn't clear, but some research indicates that low weight is associated with worse outcomes: www.neurology.org/doi/10.1212/WNL.0000000000004691

  • @helenrichards4447
    @helenrichards4447 7 днів тому

    Thank you to all the panel members. I look forward to your sessions each month. I'm 'down under' in Maroochydore, Queensland, Australia 🦘🐨🦘

    • @davisphinneyfdn
      @davisphinneyfdn 5 днів тому

      We are so glad to have you along with us. If you have a question for the panel, you can send them to us any time by email at blog@dpf.org. You can also send your questions through this form: forms.monday.com/forms/747d7103f042c66466557ec9ced36c55?r=use1

  • @andrewmcewan-sz7mc
    @andrewmcewan-sz7mc 7 днів тому

    Thank you so much for your time,I wish my support group will catch up with you. I’m trying to restart the group due to covert we disappeared and very slow to bounce back.your support is amazing and helps me to finding my way with Parkinson’s and I hope to help my friends and family to understand.love you guys ,my prayers and thoughts are with you all.Kim Queensland Australia

    • @davisphinneyfdn
      @davisphinneyfdn 5 днів тому

      Thanks for your kind comment. We are here for you!

  • @splashesin8
    @splashesin8 8 днів тому

    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.

  • @TheOnBoardLife
    @TheOnBoardLife 8 днів тому

    "I can't afford to get pissed off" about politics. Exactly. I can't afford to get pissed off at anything.

  • @therealkathleenkiddo
    @therealkathleenkiddo 8 днів тому

    Tom reminded us what a privilege it is to be in service to others.

    • @davisphinneyfdn
      @davisphinneyfdn 8 днів тому

      Tom was indeed a man of service. He continues to be missed.

  • @MyPDDaily
    @MyPDDaily 9 днів тому

    You are all inspirational! Thank you for sharing! Lots of good ideas! 😀

    • @davisphinneyfdn
      @davisphinneyfdn 8 днів тому

      Thanks for your kind words and for following along on the panelist's journeys. We're glad you found good ideas in this episode!

  • @Michael-he7xn
    @Michael-he7xn 9 днів тому

    Great conversation guys - you all covered a lot of ground. Thank you. Go Larry!

    • @davisphinneyfdn
      @davisphinneyfdn 8 днів тому

      Go Larry, indeed! We're glad to have him onboard the panel, and we're excited to follow along with his ride through Canada.

  • @jrrosania486
    @jrrosania486 9 днів тому

    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
      @davisphinneyfdn 8 днів тому

      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

  • @kendrapatterson4629
    @kendrapatterson4629 10 днів тому

    Wonderful as always ladies ❤

  • @jonicraneconsultant
    @jonicraneconsultant 10 днів тому

    I agree. Even the best doctors have not explained anything the 6way she has. As we 😊know, the more the patient understands and the family members- the easier it is to deal with. With - no matter what it is -I even thought this about death. The patient and the entire family must work together.

  • @splashesin8
    @splashesin8 10 днів тому

    I get overwhelmed often, yet remain here wherever I am with my body here doing whatever unnatural thing it might be doing at the moment. Even though I come up against this wall time and again frequently it takes me awhile to grapple with, and review the last several mortifying situations, and what I found most difficult and how I resolved what felt most, horrifying and also just beyond my control. There's all of that and then just feeling naked, although I do put on clothes to go outside, and conduct business interactions. It's just that being under everyone else's looking glass, while I'm feeling like I'm metamorphising like the Werewolf In London friends. Except I'm by myself most of the time, trying to not, be the Uncanny Valley. I think I had more positive interactions with strangers when my masking, was masked. I didn't enjoy a lot about it but there was that, peculiar relief.

    • @therealkathleenkiddo
      @therealkathleenkiddo 8 днів тому

      your description is so relatable. I keep thinking about it and I’ve been writing on the topic for quite some time. Just trying to find the right prescriptions has been another trip. Thank you for this and thank you for listening.

  • @philiphague1834
    @philiphague1834 10 днів тому

    Heather & Kat, 2 of my best friends that I have never met. I am 81 and have had PD for over 15 years. Have seen as many of your videos that I could find and have learned so much from both of you. When I fall, I keep getting up. THANK YOU so very much. Miss Tom very much.

    • @davisphinneyfdn
      @davisphinneyfdn 10 днів тому

      Way to keep at it! Thanks for listening!

    • @therealkathleenkiddo
      @therealkathleenkiddo 8 днів тому

      Honored that you are listening and thrilled to be spending time in the company of great peeps!

  • @troyspain7073
    @troyspain7073 11 днів тому

    So I see VA doctors and am medicated 25/250 4 times a day uhm I keep hearing about medical teams uhm mine don't seem to talk to everyone and I worry about the drugs they have me on, aside from Parkinson's I have esophagus cancer and ulcers just wondering about absorption of medication, any help would be appreciated

    • @davisphinneyfdn
      @davisphinneyfdn 10 днів тому

      Here's an article that describes some factors related to medication absorption: onlinelibrary.wiley.com/doi/10.1111/ene.15734#:~:text=GI%20barriers%20to%20levodopa%20transport,can%20further%20alter%20levodopa%20pharmacokinetics There are many things related to the digestive process that can affect absorption, and one way you can check to see if the "team" has access to the same information is to ask if they all use the same medical record system. Pharmacists can also be helpful: its easy to skip by the question "do you have any questions" when you pick up medications, but if you have any concerns about medication related interactions, this can be a good way to start to get answers. It can also help to bring a list of ALL medications and supplements you take to every appointment.

  • @troyspain7073
    @troyspain7073 11 днів тому

    Uhm I can get cold in south Alabama when I should not and I sweat in the winter which should not happen

    • @davisphinneyfdn
      @davisphinneyfdn 10 днів тому

      This sort of autonomic temperature regulation issue is fairly common for people with Parkinson's. Here is a video with more discussion of the topic: ua-cam.com/video/yWU5sYwtrsk/v-deo.html

  • @johnshellsykes8765
    @johnshellsykes8765 11 днів тому

    What happen when you get sickness and diarrhea

  • @mosheofer
    @mosheofer 11 днів тому

    Thank you! I'm convinced.

  • @berniehelbling2891
    @berniehelbling2891 13 днів тому

    I had DBS surgery done January 15 2o24-.After a nightmare experience of surgery I was having no positive micro lesion effects at all. After some healing they started programming. The online appointment didn’t work very good.(maybe because of bad internet) so I still have to travel-flight. I still wait for some positive results. Ap to now it was not worth. I still have some hope.- Your videos have been the reason for me to get it done. Unfortunately it seems not to work for me. I’m born1957 and diagnosed in 2013. Taking 19 pills every day!

    • @davisphinneyfdn
      @davisphinneyfdn 12 днів тому

      Thanks for sharing your story. We're sorry to hear you haven't found benefits from DBS yet. That said, while the majority of people have a positive effect from DBS, not everyone has positive results from DBS--especially not immediately. Sometimes, it can take months to establish effective programming. It is also possible for the DBS leads to be placed ineffectively and for there to be additional surgery required to get positive effects. It's pretty rare, but some people don't ever experience significant positive effects from DBS. It is possible that imaging at your in-person visit might provide perspective on the placement of the leads and help improve your programming parameters. You might also benefit from seeking an alternative perspective from another programmer. Contacting a representative from your DBS device manufacturer might help facilitate this. Also--we recently published a post about DBS recovery that might be helpful to provide perspective: davisphinneyfoundation.org/dbs-recovery/

  • @sheliacockerham-pi7tj
    @sheliacockerham-pi7tj 13 днів тому

    The best explanation I have ever heard. thanks ⚘

  • @splashesin8
    @splashesin8 15 днів тому

    ❤😊

  • @ellenplotkin8124
    @ellenplotkin8124 16 днів тому

    Great speaker, teacher and clarifier.

  • @bsingh12
    @bsingh12 16 днів тому

    Thank you Dr Mathur for this enormously empathic and human video. So much information, I have my first appt. coming up with a neuro urologist, I feel ready now !

    • @davisphinneyfdn
      @davisphinneyfdn 12 днів тому

      We're glad you found value from this video! Don't forget to bring notes to the appointment with your questions!

  • @waheedamarican2108
    @waheedamarican2108 16 днів тому

    When I watched this video I was literally in tears, because of feeling trapped in constant pain. Just knowing someone totally gets it gives me hope to release myself from this vicious circle of pain which my neurologist seem to dismiss. 😥 Thank you very very much. ⚘

    • @davisphinneyfdn
      @davisphinneyfdn 12 днів тому

      Pain is a significant and under-recognized issue for many people with Parkinson's. It can be easy for people, even some providers, to notice only the overtly visible parts of Parkinson's, and this is a mistake. We try to highlight this aspect of Parkinson's to work against this tendency. Here's a blog post about pain that might also be helpful: davisphinneyfoundation.org/pain-and-parkinsons/

  • @FlaschDJ
    @FlaschDJ 16 днів тому

    “Exercise is medicine”. Google “Dr. Jay Alberts”, PHD from the Cleveland Clinic. Then Google “Forced exercise”. Finally Google “Pedaling for Parkinson’s”. But … but …. NEVER FORGET: “One size does NOT fit all !” The healthcare system lacks resources to deal with individual differences. We often need to assert: “That advice doesn’t apply to me!” We’re all individuals.

  • @SDWP
    @SDWP 16 днів тому

    I think it's awesome that you've done this research and you're trying to get the information out via a documentary. Best wishes!

    • @davidputterman2719
      @davidputterman2719 16 днів тому

      Thank you Michele. You can do it too. I know you can.

    • @splashesin8
      @splashesin8 13 днів тому

      I think music inherently always a part of me all the time, is probably how I'm still living. Plus getting my swim back.

    • @davidputterman2719
      @davidputterman2719 13 днів тому

      @@splashesin8 Fantastic! Keep going. Cheers, Dave

  • @donkelly2319
    @donkelly2319 17 днів тому

    Caretakers lose attraction

  • @splashesin8
    @splashesin8 18 днів тому

    😊

  • @splashesin8
    @splashesin8 18 днів тому

  • @splashesin8
    @splashesin8 18 днів тому

    Thank you for elaborating on what makes a neurologist specialist in movement disorders & Parkinsons. This also helps me to know what I'm up against trying to find a way to get to one. ❤

    • @davisphinneyfdn
      @davisphinneyfdn 18 днів тому

      Glad you found this valuable! It's also worth considering that it is possible for an experienced general neurologist to be as knowledgeable as a movement disorder specialist (MDS) about treating Parkinson's. For some people, a general neurologist may be as helpful or even more helpful than an MDS, especially if appointments with a general neurologist who is very familiar with Parkinson's are easier to access.