People with Parkinson’s Share their DBS (Deep Brain Stimulation) Stories
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- Опубліковано 4 жов 2024
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Deep Brain Stimulation (DBS) is a highly effective and reasonably safe treatment for Parkinson’s; however, it’s also frequently misunderstood by people who have been recently diagnosed. The success stories about how people are sometimes living symptom and medication-free as a result of getting DBS understandably lead many who’ve been newly diagnosed to want to get the treatment as soon as possible.
In an earlier webinar, we invited an esteemed panel of experts to talk about Deep Brain Stimulation (DBS).
In this episode of the Parkinson's Podcast, we spoke with six people with Parkinson’s who’ve had DBS. We discussed:
-How to begin the process
-How to talk to your family and friends about DBS and your hopes and concerns about it
-What to expect during the approval process
-What the surgery is really like (and do you have to shave your head)
-What recovery is like and what kind of support you might need
-The challenges of programming your device and the joy that comes when you get it right
-The myths, challenges, and victories of DBS
And more! We hope you enjoy it!
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This has been so informative and helpful for me I’m going to have DBS in May.. thank you fellow Parkies, you have led the way
how is it?
I’ve made a similar comment in another DP webinar: I wish someone would have told me here that I’d lose my voice almost completely and that my balance would go to shit. I get so tired of the ‘I got my life back’ stuff when it actually gives you a whole host a symptoms that you never had before. I’ve noticed that women’s voices hardly change which is odd but DP always have women as the majority voice in these ‘it changed my life’ crap.
Thanks for your comment. There are many ways in which sex and gender influence treatment outcomes and other aspects of living with Parkinson's. There isn't a ton of data specifically about gender differences in DBS outcomes, but here is an example of a study you might find interesting. www.ncbi.nlm.nih.gov/pmc/articles/PMC10102088/
Also, our Meetups are among our most popular videos, and the panelists are very candid about positive and difficult parts of their Parkinson's journey. There are men and women on the panel who will speak candidly about the challenges they have faced after DBS surgery. If you don't already follow this series, you can find more details here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
Well done on all off you sharing your experiences. Who the hell gives a thumbs down on this video. I'm going for this operation in 2021 and I'm terrified thanks for sharing as this helps the likes off people that are getting it done
Good luck to you and I hope everything goes really well🙏🤞❤️✨
How did it go mate ?
My husband had his done at Vanderbilt and it’s like a 3 hour trip one way. He had numerous tests before the actual surgeries. I can’t tell much difference after the surgery but it could be we are not taunt the remote correctly. He can’t see his local numerologist until the end of May. It is a hard surgery to go through. 3 surgeries in less than 3 weeks, it was too much on him and me his wife. It is expensive for seeing no change much. Vanderbilt hospital isn’t recommending by me. They do not communicate well after the surgeries and during the entire ordeal. It was the closest. The Doctor gave my husband a brain bleed but not on the brain. Outside the skull. There’s a lot of risks but I’m hoping when we actually see his neoroglist they help us figure out how to use the actual remote
Roblexeli - I'm sorry your experience has not be ideal so far. I do hope that with some more time to work out the programming that your husband begins to see the benefits from all of the money, pain, and time he's put into having it done.
Thanks for sharing your experiences so openly. I have been advised to think about DBS and this discussion will be of great help.
When I first had the surgery, I was under the impression that it was going to cost about $630,000
Thank you guys I’m scheduled to have this surgery in a few weeks
Good luck to you. I really want to have it in the mentioned it to my neurologist but he made it seem like I would have had to have had Parkinson’s for at least 15 to 20 years before they even consider it😢
DBS was miraculous for my husband in 2012. It can't keep up with the progression.
Unfortunately, he is wheelchair bound now in 2020
So it didn't work very long?
@Ann-sf6od Unfortunately, no. He lost his battle 1 and a half years ago . He ended up with Lewy Body....but...I know of ppl who are doing GREAT after 25 yrs!
Does DBS stop incredible sleepinees from PD?
There is not a clear consensus on the effect of DBS on sleep issues. One reason is that the effect can be different depending on where the DBS leads are placed. Here are a couple of articles on this subject:
www.sciencedirect.com/science/article/abs/pii/S0303846720300640#
www.ncbi.nlm.nih.gov/pmc/articles/PMC3036959/#:~:text=One%20study%20evaluated%20quality%20of,2007%5D.
Can it make you feel worse on your systems while being programmed after DBS.Iv had 2 programmings now and playing with my Carbadopa and Levodopa and a Pramipexole and they just Amantadine 50 mg/5 ML twice a day go to that yesterday started that medication there with my other medication but I feel worse really even though I’ve had to program is now set normal to feel worse rather than better? I wonder how many takes to make you feel better ? I think I would feel worse after two programming‘s with my symptoms that would be better is to be expected and just have to wait for more programming get it right to feel better.?
Very informative. May have DBS surgery soon.
Good luck, Lois. Let us know how it goes if you decide it's the right step for you. And stay tuned for a lot more content around DBS in 2023!
I had DBS on Aug 8th this past year. I am a 66 yr old man. I am still trying to work in a challenging career. Would you be interested in my joining your group discussion?
Hi Gary - Thanks for reaching out. We have a lot of brand new content about DBS coming out in 2023. Would love to connect sometime about your story with DBS and working.
@@davisphinneyfdn OK! Anytime!
Prices
How about adding some people whose DBS was not helpful?
Thanks for your comment. It's true that DBS does not necessarily work well for everyone.
This comes up with on our Living with Parkinson's Meetups (multiple panelists have had complicated and difficult experiences of DBS). Some of DBS difficulties are also discussed in this video: ua-cam.com/video/YrAAo8FCr48/v-deo.html .
We also have relevant content on our website, including this post: davisphinneyfoundation.org/when-dbs-powers-down-a-personal-account-of-what-happens-when-the-device-stops-working/
thanks. @@davisphinneyfdn
Were these individuals able to drive after surgery?
Yes, I was able to drive right away after DBS, assuming that there are no side effects from any pain meds taken after surgery.
My papa has also underfone dbs surgery from india....
Hey staffi.. my father has also undergone DBS from India. Would love to hear about your father's experience and outcomes
He is good and doing his chores..underwent surgery at kims hyderabad
Holy cow! Fahning is one grumpy dude!
Or he’s got some wonderful facial masking not improved with DBS🙄
OMG, Michael. I read the comment and didn't realize it was you:) So funny!